Help 4 HD News Channel with Louise Vetter

Show Transcript

Show: Help 4 HD News Channel with Louise Vetter Aired: 3/27/2012 10:30 PM UTC Host: HD Support Groups Description: TUESDAY, MARCH 27, 2012 Thank you for tuning in to the NEW Help 4 HD News Channel. Tonight our call-in numbers to listen are 310-982-4227 and 877-497-4103. The news channel will be a different format with closed panel. We will be announcing all future news channel programs through blogs, email and Facebook. The Help 4 HD News Channel will also be accessible through iTunes and Android markets, and downloadable through www.help4hd-international.org and www.wehaveaface.org. If you hear this “door bell” sound; that means a question has come in from our community. Tonight our guest is Louise Vetter, CEO of HDSA (Huntington’s Disease Society of America). Before joining HDSA in 2009, she spent nearly 10 years leading the American Lung Association of New York and earlier in her career she led national health education and public relations campaigns for Fleishman Hillard International Communications. After hearing from many members of our JHD and HD community, fellow bloggers and research scientists, the HD community has expressed their desire to understand HDSA’s situation regarding fundraising, allocation of funds for research and where to direct their individual and collective volunteer efforts. Ms. Vetter is here with us tonight for a question and answer session. We have three categories to discuss tonight: Research, Fundraising and Annual Report.

[Start of Transcript]

[Melissa Biliardi] 0:16: Welcome to Help 4 HD News Channel. This is Melissa Biliardi and this is a brand new show for us, Help 4 HD News Channel. Tonight, our call-in numbers are 310-982-4227 and 877-4974103 to listen, call in and listen to the show. The news channel will be a different format with the closed panel and we will be announcing all future news channel programs through blogs, email, and Facebook. The Help 4 HD News Channel will also be accessible through iTunes and Android markets, and downloadable through help4hd-international.org and wehaveaface.org. If you hear this "door bell" that means a question has come in from our community. We have Facebook chat up and we also have blog talk radio chat up. Tonight, our guest is Louise Vetter, CEO of HDSA (Huntington's Disease Society of America) and before joining HDSA in 2009, she spent nearly 10 years leading the American Lung Association of New York and earlier in her career, she led the national health education and public relations campaigns for Fleishman Hillard International Communications. After hearing from many members of our JHD and HD community, fellow bloggers and research scientist, the HD community has expressed their desire to understand HDSA's situation regarding fundraising, allocation of funds for research and where to direct their individual and collective volunteer efforts.

Ms. Vetter is here with us tonight for a question and answer session. But now, I would for you, our incredible listeners to communicate with us by typing your questions to us in Help for HD chat room or Facebook live chat and welcome Louise. How are you?

[Louise Vetter] 2:04: I am well Melissa. Thank you so much for having me on this show.

[Melissa Biliardi] 2:07: You're welcome. We have three categories tonight: research, fundraising, and annual report, so let's jump in. First category is research. What is the current status of the Coalition for the Cure?

[Louise Vetter] 2:22: Well, the HDSA Coalition for the Cure was fully funded through 2009 and 2010. And then, in 2010, we actually took a step back and focused on paying down some obligations that we still had to the researchers. Basically, we had gotten a little bit ahead of ourselves and we still owed these researchers quite a bit of money. So, in 2010 and 2011, we took a break and we communicated with the investigators that we would be focusing on getting current with our payments and at the same time, launching a new strategic plan so that we could plan a new research program.

[Melissa Biliardi] 2:59: Great. Now, I have a few emails that just came in this morning and I was wondering if I could just jump in here and ask a couple of questions.

[Louise Vetter] 3:08: Okay, sure.

[Melissa Biliardi] 3:09: From the community. Okay, Richard wants to know -- he says, I just heard about the research grant in arrears. When will this be paid off?

[Louise Vetter] 3:20: I am happy to say that we are fully paid off on all of the research grants. It took a lot of hard work, but we were able to get completely current in all of our payments, that includes our Centers of Excellence Program. We often got a lot of questions about that as well and I am happy to say that we are fully current on all of our payments and it took us a few years to do that.

[Melissa Biliardi] 3:41: Wow. Okay. Now, Lyn wants to know -- she says I live in, okay, Northwest United State. I don't know where that might be specifically and I have a question. I have had extensive conversation with my local HDSA chapter president and it was said that the research has had been stopped. If there's a problem financially especially with our current economy situation, why would the HDSA just say that?

[Louise Vetter] 4:11: Well, what we have done is -- and I said we left the Coalition for the Cure grant cycle that went through 2009 and 2010 and with most grants, they were on a three-year cycle. So this was a natural conclusion to the cycle and then rather than renewing a new set of grants that we didn't have the funds to pay for, we took the time to get current on our payments and plan a new research cycle. So, we're not out of the research business. What we've done is we have taken a break in funding these grants. All of the dollars that have been raised specifically for research have been restricted for research so that when we have this new program up and running. We have those dollars to invest in our scientist and we are very committed to reinvesting in research and launching a new program.

[Melissa Biliardi] 4:59: Okay. Here is another question from Chris M. He says, "I watched the online video from UCSF symposium and I don't understand why the researcher would say that HDSA stopped funding in research in 2009."

[Louise Vetter] 5:17: I haven't seen that video in particular, so I am not sure which researcher is profiled in that video, but what I can say is that the Coalition for the Cure cycle ended in 2009-2010 and we were paying coalition investigators through 2010. So, what we are doing right now is through the strategic plan, we've mapped out a new program and we are going to be getting that up and running this year.

[Melissa Biliardi] 5:45: Okay. Let's see It looks like we have a question from the chat room. Will the Coalition for the Cure team continue like it was before?

[Louise Vetter] 6:02: It's a great question. The research team will be different and I say that because when the strategic planning group met to look at how HDSA dollars can make the most difference in research, we focused on three things. We wanted to make sure that we aren't doing a research program that somebody else is already doing so we want to make sure that we're doing something unique that's innovative. We also want to build a new generation of HD researchers and bring new people into the HD science team so that we have more and more smart thinkers contributing to our body of science. We also want to leverage what HDSA does well and that really is the Centers of excellent and the coalition and so this new program is going to build on those three items and actually, all of the Coalition for the Cure investigators are going to be invited to apply to this new program and our goal is to think up our coalition investigators with Centers of Excellence so that we can focus more on human biology research.

[Melissa Biliardi] 7:12: Okay I have another question here. I'm sorry. How can we verify where research dollars are going?

[Louise Vetter] 7:22: We encourage folks to reach out to us directly. They can contact folks - contact us an info@hdsa.org and we will respond specifically to questions. Our audited financial statements, and annual report, our financial audits of where of what dollars we are investing in research and we are certainly am open and transparent to share that information.

[Melissa Biliardi] 7:48: Okay. Let's see I think I might have a couple of more questions. Okay, from Ben in Facebook chat, "Why hasn't this change in the coalition funding or hasn't this change in the coalition funding be made transparent on the HDSA research website?"

[Louise Vetter] 8:11: HDSA only has one website, that's HDSA.org and we've been keeping that information up-to-date and additionally, we've been communicating most recently I would say with the focus on the strategic plan recognizing that all of our new research endeavors are coming through that strategic plan. So, I would encourage folks to look at the strategic plan which is at HDSA.org and there we have a framework of what that program will look like and as I said, we are certainly committed to being open and I welcome any specific questions.

[Melissa Biliardi] 8:47: Alrighty and looks like I have another question here. I read a blog that stated that CHDI had received a huge donation for research. Is CHDI going to work with or help the HDSA to pay for research and we donate directly to CHDI? [Louise Vetter] 9:13: CHDI is a private foundation. They are not a public nonprofit, so as a result they are not set up to receive public donations. They are research focused and they have received a private gift that allows them to be a research focused organization and that's really how they were set up.

We have a very strong partnership with CHDI as they fund science. They work very closely with us and we work with them to communicate science out to the community. And also as clinical trials get up and running and there's more and more therapeutics being explored, it's going to be the role of HDSA and the community to help get folks involved in those clinical trials so that CHDI's research can move forward.

[Melissa Biliardi] 10:04: Alrighty. I think we have another question "door bell". Okay, we do have another question. Here we go. Okay. Were the people who were raising money for the HDSA through walks, fundraising, etc, informed that the monies they were raising was actually going to funds or research in arrear?

[Louise Vetter] 10:29: Well, all of the special events of the organization does and specifically, the team hope programs support the general operations of the organizations so they are not research focused.

They are not Centers of Excellence focused. They're general operating support. So, nothing specifically allocated from those events to fund certain things. So, when we fundraise at those events, we're saying your dollars support all the work of the organization and in some cases, those dollars supported Centers of Excellence or support groups and other dollars may have supported research payments that we still needed to make but all of it went to supporting our mission.

[Melissa Biliardi] 11:13: (Doorbell) Okay. Here we go, another question. Okay. But why is the Coalition for the Cure researchers still listed on the HDSA.org website as if nothing has changed?

[Louise Vetter] 11:25: Because they are all collaborative of researchers that are still very supportive of our organization and they will all be invited to participate in our new research program. So, we maintain those relationships, all of the science that the coalition did is incredibly important and we looked forward to continuing our partnership with the coalition investigators as we fund a new grant cycle.

[Melissa Biliardi] 11:46: Okay, second part of the question. And can we and how do we contact them?

[Louise Vetter] 11:54: Contact the coalition investigators?

[Melissa Biliardi] 11:55: Yes. [Louise Vetter] 11:58: Certainly, I believe there's a list of all our coalition investigators online and I can also make sure that we have a mechanism for reaching out to them online so that's the easiest way to do it is through our website and I will follow up on that tomorrow.

[Melissa Biliardi] 12:11: Oh very good. Okay. Let's get on with the research question. I have another question that was kind of a compilation. Okay, why did research plummet from 23% in 2009 to 7% in 2011 and is CHDI helping to pay off research?

[Louise Vetter] 12:33: CHDI does not support HDSA research. We are two separate organizations and with separate research programs. The reason that our research sort of plummet or part of the pie chart changed so radically was because we did not fund a new cycle of the coalition. By focusing on paying off our old obligations. That doesn't show up as a new investment of course and so, that's why you see it going from 23% to 7%. When we launch a new program, that percent will go right back up [Melissa Biliardi] 13:11: Okay. I think that was kind of a shocker in the community and actually, as a fundraiser, myself like I did do some fundraising but not a lot, but as you know, a mother of someone with HD, I was raising monies for HDSA under the...idea that I was raising money for research and that was in 2011. But I know that there are many other people in the community who are kind of shocked that a research was basically cut back.

[Louise Vetter] 13:47: Well Melissa, I appreciate your honesty on that because I know that there are a lot of folks like you who very passionately support research and we respect and value that. I would say that research for HDSA is not just scientific grants and I think this is really important. We have a lot of forward momentum in terms of clinical trials that are going on across the community right now and part of HDSA's impact and research is being able to do a lot of readiness for when new clinical trials launch. So, we have a program called the HDSA clinical trial diplomat. We have HDtrials.org that promotes new clinical trials and so that's also research communications and I recognize it's a different thing than a dollar going directly to a scientist, but it is all part of our research strategy and I think it's important to know that we haven't gotten out of research. We're very committed to it and we're ready to launch a new program.

[Melissa Biliardi] 14:51: Okay. (Doorbell). I have another question. Okay. Can you be more specific that the Centers of Excellence grants are current? A few of the sites are complaining that the grant is one year in arrears.

[Louise Vetter] 15:08: I can confirm that we are currently paying our 2011-2012 grant cycle which started right at the end of 2011. So we are in our current year and we're not behind. So, I would be happy to talk with any center of excellence director who feels that there's still receiving or still waiting for old dollars but I know that we're current.

[Melissa Biliardi] 15:33: Okay. I think there's one more question coming in. Okay. Here's another, no, okay that one was not gonna come through. Okay. So described the new research program in 2013 to us.

What does that looks like?

[Louise Vetter] 15:59: Well, as I mentioned it's a new program focused on supporting human biology research for new investigators. What this means it really take the best of the Coalition for the Cure and the key I think potential of the Centers of Excellence and it brings it forward under one umbrella where scientists through the Coalition for the Cure who may not spend much time in a clinical setting. There are far too many bench scientists who had never met an HD patient and the goal was to really take new scientist working in HD and partner them with the center of excellence to study more of the human biology. So rather than looking at mouse cells or worms to be able to look at human cells to better understand the progression of the disease and so we're really excited about that.

[Melissa Biliardi] 16:52: Okay. Here we go another question. When do you expect that new research funding will begin?

[Louise Vetter] 17:01: We're looking to launch the program at the end of this year and that means having a scientific advisory committee that's pulled together to really lead the process and we're getting those steps under way. So, I am optimistic that we'll be able to get this program running by the end of 2012.

[Melissa Biliardi] 17:19: Alright. That's very good. Let's move on to fundraising. We talked a little bit about it, but one of the questions that kept ringing in to me was what portion of Team Hope Walk fundraising dollar is allocated to past due grants. That was the major question.

[Louise Vetter] 17:42: And I think it's a great question and I am happy to say none. I mean first and foremost, we're current in all of our grant payments and even in prior years, all of the funds raised through our team hope program go to the general operations of the organization so they're not allocated to past due grants. They're really spread across all of the needs of the society.

[Melissa Biliardi] 18:07: Okay. And our Lundbeck and CHDI subsidizing HDSA event?

[Louise Vetter] 18:16: CHDI is not directly tied to any of our events.

[Melissa Biliardi] 18:20: Okay.

[Louise Vetter] 18:21: And in terms of Lundbeck, they are sponsor of the team hope program and what that means is that they are providing support to help make the cost of running the team hope program less expenses to the organization so that we are able to be more successful at our fundraising. I get a lot of questions Melissa about our relationship with Lundbeck and I just want to clarify that we don't endorse any products and our funding from Lundbeck has been very specifically either educational grants for which they have no influence or sponsorships like the Team Hope Program or convention where they just make it possible for HDSA to do more, but they don't have any hands-on involvement.

(Doorbell) [Melissa Biliardi] 19:11: Okay we have a question from Helen. As a donor, I value transparency which equates to honesty, why hasn't HDSA been more transparent that there has been a big change in funding the coalition?

[Louise Vetter] 19:29: Helen, I'm sorry if you feel that the information hasn't made it to you. We've done quite a bit of discussion. We've put quite a bit of information through our chapters and online about the new direction of the strategic plan and where we're taking our research program and that's something that we're continuing to work on improving, getting the message out it's certainly something that has been news to the organization and we've been trying to reach as many people as possible, so I am just happy to be on this show today to be able to answer these questions.

[Melissa Biliardi] 20:05: Okay, here's another one this one comes from Candice and she is in Orange County and she has she says she has been a supporter of the HDSA with all the conversations going on Facebook. I've always want to verify where all of the research dollar donations go. How do I get an annual report?

[Louise Vetter] 20:30: The annual report is posted on our website and the most current one is up there, will have a new annual report up in the next month or two. Once our audited financials are completed for 2011, so that information is publicly available and I'm sorry I forgot the other part of the question. Melissa do you remember it?

[Melissa Biliardi] 20:53: Uh hold on. Here. Uh. Let's see. She has been a supporter of HDSA with all conversation on Facebook, she is always wanted to verify where the research dollar donations go.

[Louise Vetter] 21:11: Right! Thank you and I'm sorry I missed that.

[Melissa Biliardi] 21:15: And she wants to know, how to get an annual report and can she get an audited financial.

[Louise Vetter] 21:21: Right! So, the annual report is up on our website and audited financials are available upon request. So, info@hdsa.org and the audited financials are publicly available documents. In terms of the research dollars and where they're going as I mentioned right now we have -- we're waiting for new research program to launch, so the funds that we received that are restricted to research because we still received many donations to fund research are restricted, which means we essentially put them in an account and they're sitting, waiting for us to launch this new program.

[Melissa Biliardi] 22:01: Oh! My goodness! I got so many questions. Okay Mike F or Mike asks or comments, doesn't Lundbeck speak at the chapter conventions and at the dinners, is this okay?

[Louise Vetter] 22:16: they do you! They speak at chapter convention at the Chapter Conventions and at the National Convention, they also speak at dinners and as a sponsor because of their support we provide them an opportunity to share their message to the HD community.

[Melissa Biliardi] 22:31: Okay and this is the second part of the question. I just got this part. Charity Navigator gave HDSA two stars why so low?

[Louise Vetter] 22:42: We actually just reached Charity Navigator last week with the exact same question and it's because Charity Navigator didn't see that our annual report is on our website and they update our rating once a year and so they're waiting for us to put our new annual report for 2011 up before they change their rating, but we're very sensitive to that and we're very disappointed that it's because they didn't see our annual report on the website.

[Melissa Biliardi] 23:07: Okay. I think I have there is another question here. Okay I am sorry that was not the one, but I think you know - but I did have another one here. Hold it -- hold on Michael and I don't know where Michael is from. He says I worked with a nonprofit organization and I want to know if the HDSA is concerned about their nonprofit status by advertising how funding is being spent by advertising in the walks, dinners, and other chapters events if current research is not being funded. I think he is talking about those of events were they advertise that the money thing were used for research.

[Louise Vetter] 23:54: We definitely take our nonprofit status very seriously. It's something that we are very mindful of and we also work closely with the chapters to make sure that their communicating our mission and the programs that we are supporting now and the direction of the new programs we're going to be launching, so certainly if there's an event that someone has concerns about specifically how it is being promoted, let us know and we will look in to it with 45 chapters in over 350 events is a lot to watch, but we - you know we certainly will investigate that because we want to make sure that everyone is representing our overall mission and the true sense of what we're doing and where we're going.

[Melissa Biliardi] 24:40: Okay. Nancy has a question. I attended a recent HoopAThon and ask were the funds for the event will go, I was told it will go directly to research. Please tell me what is the actual research program or study? So, I don't know if you can answer that one.

[Louise Vetter] 25:02: It's hard to answer only because I don't know which event it was and I would say that if the event was specifically designated to research and they are a few events where the chapter or the coordinator works closely with us for that purpose, then those funds are being set aside for the new research program. But you know I would need more information on the event, specifically to look in to that.

[Melissa Biliardi] 25:27: Okay. Now, there is the question that I have. When HDSA has Lundbeck speak at you know with the events, it seems as though HDSA is pushing Xenazine or you know recommending Xenazine are you concerned about that at all?

[Louise Vetter] 25:51: We're very mindful of that and we take very seriously our conversations at Lundbeck at the national level to make sure that, that is not the message because it certainly we don't endorse products, we're not pushing anything and we wanna make sure that this is truly the educational partnership that it is. We know that Lundbeck is committed to helping families with HD and from the perspective this is a shared goal, so you know that said they speak at many events and have close relationship with our chapters, but it is something that we watch very closely and if there was something said (doorbell) that was a specific question.

[Melissa Biliardi] 26:32: Sorry.

[Louise Vetter] 26:34: That's okay let me know...

[Melissa Biliardi] 26:35: We have so many emails, questions, chat room, and we're -- this is crazy. I've never seen it this active. So, anyway here's another question. Why hasn't the physician's guide been posted as a free resource in PDF before now?

[Louise Vetter] 26:57: It will be on the website soon and the reason that it has not been up there is because we've been working really hard to build our referral list online and one way to do that is to request folks to share with us the name of their HD physician, so we can then reached out to that physician.

Find out if they would be interested in being listed on our referral network and it's been a very successful mechanism for us to build the list of doctors that have experience with HDs that when family call us, we can build that referral. We've heard the cries for everyone to have it online and we're looking to do that very soon. So, it's absolutely on our to-do-list.

[Melissa Biliardi] 27:36: I can speak to that one too. Personally, I would really love to see it on there as soon as possible because you know with support groups and new people coming to support group and people who are not able to come to support group having a link and downloaded PDF is vital to their health to their physical mental everything health. So, as soon as you can get it, I would love to see it up there.

[Louise Vetter] 28:03: Melissa...I was just going to mention. It is definite. The physician's guide is definitely written for physicians and I think that's important to remember, so we just -- we are also were mindful of making sure that it has good resources for families up there as well, so that not everyone is going to that document.

[Melissa Biliardi] 28:21: Right! Okay, looks like we have another question. Terry, from Terry. Do you know how much money is being held in the special research account, since your saying that there's set aside account for future research?

[Louise Vetter] 28:33: I don't have that number on the top of my head. It's certainly something that is changing every day, but I will -- I can get that information.

[Melissa Biliardi] 28:40: Okay great. I have another -- this one is more related to Chapter Business and I don't know -- I'd kinda likes to take a little side a detour regarding chapter and affiliates if you don't mind.

Mary asks, does the chapter or affiliate chairperson or chapter president have sole authority to determine who is notified of meetings, events, email lists, and support groups etc...and she said the

reason I'm asking is because I was left out on several occasions and was not told about specific meetings.

[Louise Vetter] 29:22: That's unfortunate, but certainly we expect our boards work as teams, so it should never be one person making a decision for a chapter or an affiliate -- and where the goal is to be in inclusive community, we're all working for the same mission and that same vision. And so, I'm you know it's disappointing to me to hear that anyone has been left out and I would hope that, that person is able to have a productive conversation with their chapter if they're not, let us know and we can get involve.

[Melissa Biliardi] 29:55: Okay this must be a friend. This is another question from Jennifer, she says this question is important to me because it happened to someone very closed to me. Who at HDSA National authorizes chapters or affiliate to eliminate active members without notice or process?

[Louise Vetter] 30:16: There is no one at HDSA staff, that is involved in telling the chapters or affiliate who can be involved with what. That is as I said a team decision by chapter and affiliate boards where they look at their membership and if there is a concern about the behaviour of a certain chapter or affiliate, the National Field Committee works with the volunteers to help improve that relationship and certainly as I said if there is a chapter or an affiliate of particular concern where the NFC might need to get involve, I would like to -- I would certainly like to know more, so I can get to know to do more.

[Melissa Biliardi] 30:52: Okay, that will be the field development director.

[Louise Vetter] 30:57: The field development director is the staff person but in terms of managing the boards that's for National Field Committee, which a volunteer committee. That's why I say if there's board behavior in an affiliate or chapter level that folks are concerned about, they can reach out to me and then I can get the volunteer leadership involved.

[Melissa Biliardi] 31:17: Yeah! That sounds like kind of a serious situation and I would sure like be -- that handled.

[Louise Vetter] 31:25: Yeah, so would I. So, I would encourage that person to let me know.

[Melissa Biliardi] 31:30: Okay, so Jennifer if you're listening out there, please contact -- should they contact you directly or...

[Louise Vetter] 31:38: I'm expecting that there will be a quite of volume of emails from this show, so I would encourage folks just to write to info@hdsa.org that way there are several people who can make sure that the emails get responded to immediately and we will take all of these emails seriously as we always do. So, please send an email to info@hdsa.org.

[Melissa Biliardi] 32:02: Okay and here's the last question I have for this category. It is kind of chapter question as well and I put them under fund raising coz' it kind of -- I didn't have a chapter category, but it's from Rick and he says, he asked are the members of the board and chapter president directly affected or related to someone with HD, if not shouldn't this be the case?

[Louise Vetter] 32:28: The majority of our board members as in 75% to 80% has a direct connection to HD. There are a few members of the board that don't have direct family connections but because of either friendships or professional connections they have been invited. For example, we have a physician on the board, who is not personally affected but he has cared for HD patient. So, he is on the board, but everyone has to bring a commitment of familiarity and in the vast majority of cases a personal connection to HD in order to serve on our board.

[Melissa Biliardi] 33:10: Okay, here's another -- it is came in the same question. Hold on, why are they not listed to contact individually, the board members?

[Louise Vetter] 33:24: In setting up the website the board suggested that it would be more efficient for us to have an email address for the board in general, so that we can make sure that they -- that the emails get responded too quickly. Not all of our board members check their personal email the way we do from a business perspective. So, it's a way to make sure that communication is getting to them most efficiently.

[Melissa Biliardi] 33:50: Okay we have another question. Okay, this is about the physician's guide again. How long are we going to wait for it to be free the community members need it, the community needs the PDF download now, but how long would be before they can get it?

[Louise Vetter] 34:13: We're working on a new website and I think that's an important thing to mention that we are looking to launch a new website this summer and I know that it will be part of that new website. I believe it is a few months off in terms of when this will be online. And again, I just wanna remind folks that it's a physician resource, so we will happily send a copy to any individual but then additionally really that the primary audience that the physician side is written for our physicians and there are other resource that we have available for family members. So, we are...

[Melissa Biliardi] 34:51: I have question and from Jim. Okay, how many of the board members who have family connections were active(ists) in chapters.

[Louise Vetter] 35:05: I'm thinking of the top of my head and I would say most of them. Most of them are involved in their local chapter level.

[Melissa Biliardi] 35:15: Okay. Getting back to the physician's guide. I'm sorry to be a stickler about that one but my own personal experience is that I have used the physician's guide many, many, many times and working with Jimbo my son's physician because a lot of times you know when you're in an area that is maybe not covered by center of excellent or someone who a neurologist who had worked with Huntington. It's kind of been up to me to educate my physician in some ways not that I am a doctor or anything, but a lot of times the people with HD the family members, the caregivers know a little bit more about caring for their loved one than their own physician does and not that know we've gone to medical school or anything but it is in the trench day-to-day you know mucking in with all of the different symptoms and you know side effects from meds and all that kind of things. So, I really would support that, caller that person who emailed about the download. It's really vital that we have that available. Anyway, okay we have a question from Gina. Okay, the physician's guide has always been read by the families, we are the ones to get the doctors involved and I don't know if this person wants me to say her name, but unfortunately we seem to know more than the doctor so that guide should be available to us. I think they're just really crying out for the documents that sounds like.

[Louise Vetter] 37:06: And Melissa I hear that and we will certainly, and I'll, I will take this in a consideration I...

[Melissa Biliardi] 37:11: Okay that would be a good thing to do. Okay let's move on to the annual report, where it is going to be getting some more phone calls and more -- we have another one. Okay, once again this person says this person's name is Debbie she says once again my daughter's PCP or primary care physician did not receive the physician's guide that I had requested at least six months ago. That is kind of another problem is that I think -- I've heard this is not the first time I've heard

that situation where we send in the postcard and sometimes the postcard maybe doesn't go directly to the physician, maybe gets lost in the mix and so the physician's guide get sent to the doctor, but it doesn't get to the doctor. Does that make sense? I've heard that before, but anyway, I support that one too. Okay. back to annual report we have quite a number of questions about that. Okay, here is a question from anonymous and it says according to the 990 family services provide counseling and referral services to patients with Huntington's disease and their families. Why did that cost $1.8 million and I have to -- okay she says I have to question how they spent that money and I've never heard of them counseling people. So, family services provide counseling and referral services but she wants to know or he whom ever wants to know why did it costs $1.8 million. I suppose their talking about 2008, I'm not sure.

[Louise Vetter] 39:02: So, I don't know which year in particular and that is okay. I think it is important to know that our family services dollars are significant because we support through our network of centers of excellence and our chapter social workers over 37. I think its 37 exactly social workers right now though HDSA. They're not donating their time, they are there -- you know we do pay them to make sure that they are committed to helping our families. Additionally, the center of excellence part of what they do is family services, so it's a significant investment from that perspective.

[Melissa Biliardi] 39:40: Very good. Okay, here's another one we're still on the physician's guide it says why not mail the physician's guide to the person with HD so, they can physically give it to which ever PCP; primary care physician may have?

[Louise Vetter] 39:59: That's a great point we actually do that. The physician's guide is free and we will send a copy to a family. We will also send it to the doctor whatever works best our goal is to get these guides in the hands of the physicians and especially in the case when a family is working closely with the physician like Melissa you do for each of you to have a copy so that you can work it through together, so again we're very committed to getting this physician's guide out in the hand of doctors and you know the community that's working with them. It will be available online and I've heard your pleas and really I have and you know we -- let me tell you, it's going to be online and I will work with my team to look at the timeline on that.

[Melissa Biliardi] 40:47: Okay very good. That's good to know and looks like we have another question, it says hold, on let me get this, as an HDSA member we used to be able to vote in our national trustees, we want to have a voice again how can that be changed so we get a voice?

[Louise Vetter] 41:10: I haven't heard that. I didn't know that, that was part of the organization's history and it certainly something for consideration and there is a board meeting coming up and I am happy to bring that to the board.

[Melissa Biliardi] 41:22: Great. Okay next question from Sarah. She says I read Gene Veritas' blogs where he stated that in 2006, a wealthy anonymous donor who is supporting both HDSA and HDF decided to start the CHDI. Is that when HDSA started having financial difficulties?

[Louise Vetter] 41:41: No. The HDSA's financial difficulties in many ways were hit by the recession in 2008 and 2009, there had also been from a research perspective commitments that were just more than the organization could bear from a cash perspective, so it's definitely not tied to the CHDI the start a CHDI or any relationship with HDF. [Melissa Biliardi] 42:14: Okay. I think my sound was an issue is it how does it sound.. okay now, good. Sounds good. I'm trying to turn up my volume. Okay that one and we have another one from Allison, hold on, sorry. Okay according to the HDSA's 2009, 2010, annual report the 7% amounted to just $370,000. I have heard that HDSA spent practically nothing in research I forgot this is a research one in 2011. Sorry we cannot answer that one.

[Louise Vetter] 42:58: In the 2011 figures, are still being audited by our researchers right now so I don't have that number off the top of my head. I will say because we don't have an active grant with the coalition for the cure or a new research program that the dollars are similarly low, so when we launch that new program, we will see the percent go up.

[Melissa Biliardi] 43:19: Okay. Here we go, okay. Janet says I really want to know this all of that is the fault of the national board of trustees for financial oversight. Why don't they all get forced off?

[Louise Vetter] 43:38: The board members change over time. They had their limits to the terms that they can serve and it is something that it constantly in fluctuation. There is a lot of work that has been done to get the organization on very stable financial ground and that's the organization we have right now is one that is current on its payments, has a strategic plan moving forward and a very committed board and staff to making sure that we are doing the most with the resources we have.

[Melissa Biliardi] 44:08: Okay, we have another one. Here we go another one. I don't know if she wants me to use her name. Our center of excellence thinks the doctor gave us no referral, no info to support group, or no hope a huge disappointment. How is HDSA making sure they run like they're suppose to?

[Louise Vetter] 44:37: We actually have a feedback mechanism in the centers of excellence, where we want to hear feedback like this. If someone's having a poor relationship with the center of excellence or a poor experience. We take that into consideration when we review are centers of excellence. So, please, send an email. We have a committee that investigate concerns about our centers of excellence and we take that very seriously because that is travesty.

[Melissa Biliardi] 45:06: Okay, here's another one from Ian. So, if 7% of funds is going to research, where is the other 93% going?

[Louise Vetter] 45:19: It is being invested in family services. It is being invested in education and advocacy.

It is supporting clinical trial education and building a volunteer network across our country that can do more to spread the word and educate the community at large about HD. So, it's being invested across all of the missionaries of the organization.

[Melissa Biliardi] 45:47: Okay, we have another question from Deb and it is -- why is it that 2011 when I was applying for grants for the HDSA and needed their financial records, I received records from 2008 and 2009 and nothing current?

[Louise Vetter] 46:03: This is something that we've actually -- we're working on fixing and the way that the organization's fiscal year had been -- since it was started was that it started October of one year and ran through September of the next. And that always meant that it took us two years to be able to have a complete (financial) year's worth, 12 months worth of financial information January through December and in terms of audits and tax filings especially tax filings, you have to have the complete 12 months span, so we're always just about two years beyond in our 990 because of that, because we had to have all 12 months. I'm happy to say that the board has changed our fiscal year, so that for 2012 our fiscal year is January to December, so when we move into 2013 you'll be able to have the 2012 information much more quickly in terms of a current annual report and 990.

[Melissa Biliardi] 47:08: Okay, alrighty. Some of the -- here's another question I don't know who this is from, some of the trustees blame to Barbara Boyle in public for HDSA's financial problems but they are at fault. Many of those who were serving at the time are still serving.

[Louise Vetter] 47:27: I don't know Barbara and I don't know the relationship that she had with the board at that time. I will say that we have a lot of new members on the board and we've changed a lot of things about how we conduct ourselves. So, I'm happy to say that we are a refreshed organization with a strong direction and I can only, you know, express some sorrow if there were concerns about the management of the organization in the past.

[Melissa Biliardi] 47:57: Okay I have a question. Do you all meet -- at the convention was that when you have your meeting, I mean it is open to the members to the community or...

[Louise Vetter] 48:05: The board meeting themselves are not open meetings but all of the board members do attend the convention and they're certainly available for comment there and we actually have to meet the board session on the Saturday afternoon at convention that is specifically an open forum to talk with the board members.

[Melissa Biliardi] 48:26: Okay, looks like we have another question. Yes I just see this question from Helen it says people are still confuse and concerned about 7% in the chat room so maybe we can explain that one more time.

[Louise Vetter] 48:42: Okay the 7% invested research was higher in years where we had a current coalition for the CURE grant going, but because of funding concerns, we needed to -- and the need to start a new strategic plan, the board made the decision to take a break and get current on our grants and as a result the research funding is represented in the annual report dropped because we didn't have a new grant cycle in place, so that's why there was a change from 23% to 7% that's why the 7% reflects the fact the we did not have a new coalition for a CURE grant cycle.

[Melissa Biliardi] 49:28: But you are still paying the grants off right?

[Louise Vetter] 49:32: Yes! We're working on making sure that the scientists were getting the dollars that were owed to them from previous years.

[Melissa Biliardi] 49:38: But that didn't come out of the research budget?

[Louise Vetter] 49:42: No the way that the auditors actually track dollars based on new investments. So, even though we gave the scientists a million dollars, it was paying what we had already owed them, so because we were just catching up over a long time and so as a result it doesn't show up as a new investment.

[Melissa Biliardi] 50:05: So it came out on a different bucket.

[Louise Vetter] 50:07: Yes! [Melissa Biliardi] 50:08: A fund, so which fund didn't come out of?

[Louise Vetter] 50:11: It came out on general operating. There is -- sort of it's (crosstalk). Well, the annual report just shows overall revenue and expenses in terms of commitments, but it doesn't show and it just the way that the information is tracked. It doesn't show how much we paid down. So, that sort of an information.

[Melissa Biliardi] 50:40: Is not included in the annual report at all?

[Louise Vetter] 50:43: No, and that the auditors don't track that because it was not a new investment. It was paying what we had already owed, so it would have been reflected in previous annual reports as commitments that we made at that time, so as a result they don't count it a second time in the annual report.

[Melissa Biliardi] 50:55: Couldn't it be in your liability?

[Louise Vetter] 51:00: It is in the liability under accounts research grants payable. If you look at the statement of financial position the third item down on liabilities is research grants payable, so that reflects funds that were owed from previous grants.

[Melissa Biliardi] 51:19: So that was a 1.99. Okay where do I go? Hold on... There are so many. Okay first question is, is the percent for the research going to be much higher? That was one question and how much money was spent on research in the last fiscal year?

[Louise Vetter] 51:43: So in the last fiscal year, we are still waiting for the auditors to come back to us with the final numbers, so I don t have that figure, but because we did not have a new coalition for the CURE cycle in 2011, I expect that it will not be much more than the last annual report. So, again it takes us launching a new research program which we intend to do this year before we can this those dollars..before we can see that percent go up.

[Melissa Biliardi] 52:11: Okay here's another question, why hasn't a notation been made on the HDSA.org website to make it transparent as to funding for research perhaps families would rally to help HDSA pay off old debt, that was from Shaun.

[Louise Vetter] 52:28: I think the point about having more information on the website about the status of our research program is a really important one and that something that has not made note of. In terms of paying off the old grants, what's really important to know is that we have to successfully pay those down, so now we're just waiting for the strategic plan to have that in place first to launch a new program.

[Melissa Biliardi] 52:53: (Laughter), this is crazy, okay we have two more questions but this came in and I don't know if I will use his name or not, but the question is physician's guide it takes about two hours max to create a PDF and put is up online, so it could be done immediately, we are still on the physician's guide. What are the considerations that present you from simply doing it within a week?

[Louise Vetter] 53:17: As I had talked about a little bit earlier we had been very focused on building our referral systems and the physician's guide has been an incredibly helpful tool in doing that or as we'll send copies of the physician's guide to anyone who request it, but we are also looking for names of physicians who used the physician's guide so we can then talk with them, help them learn more about HD and make sure that they're on our referral network as potential places for a new families to go, because they might have experienced with HD, so that's why we have focused on that [Melissa Biliardi] 53:53: That question came from Jim Pollard and he also asked or comments, it has historically been easily available to families.

[Louise Vetter] 54:05: I know that the last physician's guide was created over 10 years ago, and so I don't know if in the beginning they went through a similar period where you requested hard copies before it was made a PDF. So, I do know how -- what it takes to make a PDF. So, it's again, it is not the technology but it's been the strategy of how we build our referral network and how we get the information out to the physicians. I've heard this feedback. I'm taking it very seriously and I will take it back to the team to look at our timeline [Melissa Biliardi] 54:37: Good, because it sound like the community really wants it and also have I question about that to Tim an individual such as myself get multiple copies of it because I do have a support group. I do have more than eight doctors for my son and it's very difficult to get the book into their hands unless I actually hand it to them.

[Louise Vetter] 54:59: It's a great question Melissa and were committee to making sure that you have a copy for each of the doctors you worked with and certainly a copy for support group discussion and for other so we recognized it as an education tool and whereas we don't want to send 10 copies to a family of ten that lives in the same house, we want to make sure that physicians and the networks of folks who are sharing this information received it.

[Melissa Biliardi] 55:27: Okay, alrighty. I have another question that came in, no doorbell on this one. From John, I've heard that HDSA center of excellence have always had financial issues why is this and where and why are new ones being created before paying off, debts in arrears I'm sure this person is not aware that you've already paid everyone off.

[Louise Vetter] 55:53: Well and that's okay. We haven't launched any new centers of excellence in several years because we have been focused on keeping the existing network of 21 strong and we are happy to be funding the current grant cycle this year so we're not behind and so it's taking us hard work to get there, but we're very committed to our centers of excellence network and we hope to be adding some new centers to that network in the coming years.

[Melissa Biliardi] 56:20: Okay, here is another question from Jill but when was it discovered that HDSA was deeply in debt and who is responsible for the financial issues? How do we contact the chairman of the board?

[Louise Vetter] 56:35: Folks can send emails to trustees@hdsa.org, that is the email for the trustees of the board and that's the best way to contact our board members and we make sure that we get the

messages very quickly and then it does send and email lololand. In terms of the organization's financial challenges over the years, there a lot of contributing factors. I have been with the organization since 2009 and I've worked very hard to put us in a position where we can be strong going forward. The economy hasn't helped, I think one of the questions Melissa and I had talked a little bit about before today's call was the fact that the economic recession in 2008 and 2009 hit HDSA just like every other organization and every individual, so it's been a little bit slower to rebuild and it's been harder to raise each dollar, but we feel we've turned a corner and if folks have specific questions for the trustees, please email trustees@hdsa.org and I can make sure that we get answers to you.

[Melissa Biliardi] 57:43: Very good, (doorbell). Okay, we do have another question from Deb, how could you possibly expect to get grants in 2011 when you are presenting record some two to three years prior, the people we were requesting grants from obviously looked at this and saw that the record were not current thus we did not fund the grants?

[Louise Vetter] 58:09: Our financial accounting is absolutely consistent with the expectations of the law and again our fiscal year being broken over the calendar year has created a challenge in our 990's so we fixed that. I will say that funding agencies, whether it's corporation to give grants or foundations understand that because of the break in the fiscal year, the information's a little bit older and I will say at the national level that's never been an issue, so if there are challenges with securing local grants because of this let us know and we can help you answer those questions, but it has not been a barrier to fundraising.

[Melissa Biliardi] 58:51: Okay, there are two part question (doorbell) two part question let see where not sure if that that part one or part two. Can you hear me now?

[Louise Vetter] 59:05: Yes. [Melissa Biliardi] 59:06: Okay, what is the funding schedule for centers of excellence they have never been paid on times?

[Louise Vetter] 59:13: The centers of excellence grants are year-long grants so what we say is by the end of the 2012 period of your grant, you will have received the full amount and we are now current. I know that we have not been for many, many years, but you know now we are paying our current grant.

[Melissa Biliardi] 59:38: So that the grant is paid by the end of the year?

[Louise Vetter] 59:40: By the end of the year, yup.

[Melissa Biliardi] 59:42: And are there payments in between or just at the end of the year?

[Louise Vetter] 59:48: It says we only have to pay by the end of the year, but we do make payments in between.

[Melissa Biliardi] 59:51: Okay, I just add that in, I'm sorry.

[Louise Vetter] 59:55: No, that's okay.

[Melissa Biliardi] 59:56: Okay, here is another question from Tim, who votes in a person to the board of trustees I've been around for awhile and used to be that members had a say?

[Louise Vetter] 1:00:10: This is the question that I think someone else mentioned earlier this idea of the community voting in members of the board or at least one representative that something that I was unfamiliar had been as historical part of the society, I don't know when that stopped, but right now there is nomination's committee that takes nominees and every spring I send an email out to the full HD community saying the board of trustees is interested in adding new members, if you are interested in being nominated or you would like to nominate someone let me know and then we investigate some and meet those folks (doorbell).

[Melissa Biliardi] 1:00:49: And will be putting that on the website or...

[Louise Vetter] 1:00:52: Yeah, I do it every spring usually in April or May and also I'll make sure that goes out by email and also was on the website.

[Melissa Biliardi] 1:00:59: Very good. It's looks like we have two more questions that came in, one is instead of adding new centers of excellence, why not increase the funding for existing centers of excellence, so they can be in a better position to increase that and get ready for the future clinical trials.

[Louise Vetter] 1:01:15: And that's something that's been talked a lot about by the organization. We've given a lot of hard thought. The board right now feels that in the short term, we need to be adding centers of excellence to cover areas of the country where there is not enough dedicated HD support and then potentially over time we can look at increasing the grant size and amount, but the board felt very strongly at the priority right now was to feel the gaps and service and then to be able to look at the size of the funding at a later time.

[Melissa Biliardi] 1:01:49: Okay, here is another question from Ian, why are board members and local chapter directors getting paid?

[Louise Vetter] 1:01:59: They're not. There are no member of the board received a payment and at the local levels that is absolute a volunteer position. Part of our 501c3 status with the IRS is that we do not pay any volunteers and if someone has heard otherwise, let me know.

[Melissa Biliardi] 1:02:21: Do the board members have to pay?

[Louise Vetter] 1:02:25: We encouraged board members to contribute to the organization and I'm happy to say that right now all of our board members do generously contribute to our organization. There is no fee for membership though. It's not a requirement that to be on the board you have to write us a check (doorbell) but we encouraged them to give.

[Melissa Biliardi] 1:02:43: Okay, another question from Patty and she says ask again, are you saying that the HDSA financial had been turned into the auditors, but you don't know how much money was spent on research in the last fiscal year?

[Louise Vetter] 1:02:59: I am waiting for the final numbers from the auditors.

[Melissa Biliardi] 1:03:03: Okay, alrighty. Let's go on - you know I did want to have you kind of explain the annual report process and how that all kind of gets compiled and put together and submitted before it goes on the website and I know there is a process.

[Louise Vetter] 1:03:22: Sure! We actually, we bring an independent firm to audit the organization and they come in and they looked at all of our books. They look at the national revenue and expenses and all of the chapter in regional and affiliate revenue and expenses and they put together a consolidated report of all of our expenditures across the organization and that takes several months to do.

[Melissa Biliardi] 1:03:48: Okay, Patty wants to know but weren't you the one who turned in the numbers back to what we were talking about, okay.

[Louise Vetter] 1:03:56: Yes, we put together numbers and then part of an auditor's role is they try to verify each and every number, so there may be a penny here, or a penny there or question about an expense, but their job is to go through and comb through and verify every single number and that's why until I receive the report back from the auditors I don't have final numbers.

[Melissa Biliardi] 1:04:21: Okay, so you can't give general numbers you have to give exact numbers?

[Louise Vetter] 1:04:25: I don't think it would be appropriate to share numbers that just haven't been reviewed because one we get a draft back from the auditors then we have a finance committee that reviews those numbers and then the board has to look at them to really you know look at the organization's performance, so we have a process in place so I think it's important to follow the process that when it comes to our financial.

[Melissa Biliardi] 1:04:48: She also want to know when that would be released probably?

[Louise Vetter] 1:04:53: The audit is currently being finalized and then our annual report would be available probably a month to six weeks after that, takes a little bit time to compile the information, so we should have it up in a month of May.

[Melissa Biliardi] 1:05:07: Okay, very good. I think I knew it is the annual report process, so getting back to that a compilation of those numbers of years, whatever and that takes about how long to do all that?

[Louise Vetter] 1:05:25: About six months, that six months for the full review of all of the numbers and then for the board to go through it and for the numbers to be finalized so we're looking to speed that process up and I say that just because with the change of the fiscal year I think next year will be easier, but once the audit is done then we take that information and we put in to the annual report.

The numbers aren't change between the audit and the annual report and then that's publicly available document.

[Melissa Biliardi] 1:05:55: They aren't changed, or they are changed.

[Louise Vetter] 1:05:57: They're not! So when the audit is finalized, we use those numbers in the annual report. They are no changes between those numbers.

[Melissa Biliardi] 1:06:04: Right and you have a firm that do that for you?

[Louise Vetter] 1:06:08: Correct.

[Melissa Biliardi] 1:06:09: Okay, can anyone get a copy of the audited financial statement then?

[Louise Vetter] 1:06:13: Yes, yes.

[Melissa Biliardi] 1:06:15: And how would they go about doing that?

[Louise Vetter] 1:06:16: Send an email to info@hdsa.org.

[Melissa Biliardi] 1:06:22: Okay, there is another question coming up here. (doorbell) okay this question is from Mary, she says, does Louise get paid or is she a volunteer?

[Louise Vetter] 1:06:34: I'm a staff person, so I get paid.

[Melissa Biliardi] 1:06:37: Okay, the next question would be. Okay, we talked about questions relating to investments, what are HDSA's investments?

[Louise Vetter] 1:06:52: HDSA really doesn't have many investments. There are a few investment accounts that were set up because donors gave us sums of money for specific purpose and then told us to invest them, so that we could draw on the principle of the investment as well as the interest. So we have just a few and I would say a handful maybe five that are actually in very conservative CDs and because we have a very conservative investment policy, but again they were donor designated. On rare occasion, the organization received stock gifts and it is our policy that as soon as we received a stock gift that we sell the stock and use the cash to invest it into our mission, so we're not playing the stock market, we're not in any volatile investments. There is specific investment account for specific conservative purposes.

[Melissa Biliardi] 1:07:53: So HDSA immediately upon receiving a stock will liquidate it and invest it in their mission.

[Louise Vetter] 1:07:59: Correct.

[Melissa Biliardi] 1:08:00: And that would go into the general fund or into a specific mission?

[Louise Vetter] 1:08:03: Depends. If...everything is donor designated so if a donor says you know the proceeds from the stock are restricted to research then they get restricted to research, if they say they're restricted to the centers of excellence they go write into centers of excellence, so it really is donor directed if someone (doorbell) doesn't direct then that is general.

[Melissa Biliardi] 1:08:24: Sorry, okay, two questions. Mary wants to know, how many staff people do they have that get paid? How many staff people does HDSA have?

[Louise Vetter] 1:08:36: We have 35 across the country and I hesitate only because we have people coming in and going like any business, but I think our current roster is 35.

[Melissa Biliardi] 1:08:49: And those are regionals and...

[Louise Vetter] 1:08:52: We have about half the team works in New York as part of a national office, so its receptionist, its social workers, advocacy, education, communication and finance, it's everything that runs the nationwide organization and then the other half of the staff team is actually regional staff spread out across the country working with our chapters.

[Melissa Biliardi] 1:09:14: Okay, and she also wants to know, what is your salary?

[Louise Vetter] 1:09:19: (Pause) I actually don't think that's a question that I'd answer. I think that's private information.

[Melissa Biliardi] 1:09:28: Okay and the next question is from Terri and she wants to know wants to comment I am upset how do you expect the donors to give for research when we cannot get a simple answer from you about a ballpark figure on how much HDSA spent on last fiscal year's research.

[Louise Vetter] 1:09:53: I understand the concern and I will say that because we did not launch a new research program last year that the figures are going to be similar to the prior years. I don't have that specific information at hand, but again we'll waiting to launch a new program before the percent and the investment and research really goes up, so right now, the funds that we are spending on research are to continue our dialogue with the coalition for the cure and support our clinical trials and we will be launching a new program very soon.

[Melissa Biliardi] 1:10:26: Okay and the next part of the question from - I think it's from Mary, I'm not sure which one is from. Charity navigator lists your salaries is that correct?

[Louise Vetter] 1:10:43: The...I know that they're are publicly..there are public IRS documents that include some salary information. I don't know if charity navigator has that, I don't know there are many, many websites that rate charities and have different information.

[Melissa Biliardi] 1:10:59: I believe it does, looks like hold on, (doorbell) okay I think it's a 151,000 is that correct?

[Louise Vetter] 1:11:21: Whatever the 990 says.

[Melissa Biliardi] 1:11:31: ...okay for whatever year I don't know what that year is. Alrighty and what is the federal campaign, what is that?

[Louise Vetter] 1:11:37: The federal campaign is actually a nationwide workplace giving campaign and it's run by the United Way and the United Way is another non-profit and what they do is they go into businesses and they encouraged folks to donate through payroll deduction. So they encouraged both to donate to many, many charities and that we work with them to make sure that HDSA is listed as one of those charities and then folks can donate to HDSA through their workplace and United Way makes sure that we receive these dollars. So the federal campaign is specifically geared toward government workers and that is why it's called federal.

[Melissa Biliardi] 1:12:17: Okay, so is it like our service people?

[Louise Vetter] 1:12:22: It's in the US post office, it's the folks at work at VA so its many, many federal institutions and again it's just a different mechanism to give to HDSA. [Melissa Biliardi] 1:12:34: Okay, here is another question or comment, this is from Jonathan Monkmeyer, we have many disfranchisement volunteer including the board of four chapters who have resigned and protest over national, what are you doing to bring unity back to the HD community?

[Louise Vetter] 1:12:56: (Pause) The HDSA is incredibly focused on its mission and I'm working very personally with the board and the chapters to launch a new strategic plan that squarely moves the mission of the organization forward so that we're making more of a difference in the lives of those affected by HD. That's a personal commitment and a passion and it's something that the entire organization is taking very seriously. Volunteers have left the organization over the years for a variety of reasons and in all cases new volunteers have stepped up to contribute to HDSA, their time, their skills, their dedication so we're an evolving organization. One that has a lot of growth and impact ahead of us and an organization that I am proud to be a part of because that I know we're doing great work.

[Melissa Biliardi] 1:13:50: Great, I think we have another question. We have two questions so far, I don't know if I'm supposed to use his name maybe.. Jim, is there a minimum research percentage or target?

[Louise Vetter] 1:14:06: As much as we can do, so there is no minimum, there is no maximum, we need to look at what the organization can bear, when we launch a new program, but we're certainly looking to see that percent on the pie chart grow.

[Melissa Biliardi] 1:14:23: Okay (doorbell) we have another question they are kind of trickling you know, Richard wants to know why does HDSA makes it resigned staff and volunteers to sign confidentiality agreements.

[Louise Vetter] 1:14:46: (Pause) Confident, we asked all volunteers we ask all staff and many volunteers to sing conflict of interest documents, but there isn't a confidentiality document specifically that folks sign. We do recognize that if folks have been giving to HDSA and that information is HDSA information that for example the list of donors to special event that's an HDSA list of donors, so we treat that as proprietary information, so there have been some conversations about that, but I can't think of a single confidentiality agreement that we have.

[Melissa Biliardi] 1:15:24: Aren't they listed in your annual report?

[Louise Vetter] 1:15:30: Yes large donors are listed in our report and you know certainly who is donating is one thing, but there are cases that we've been asked for the mailing list for everyone that has supported an event and in that case we say that you know donors expects at their information is not distributed, so we don't do it because donors (doorbell) won't like it, but then additionally we are sensitive to the fact that those folks have given to HDSA and that's a valuable resource for us.

[Melissa Biliardi] 1:15:59: Okay, I have a question from Marisa or comment. I personally have reached out to her, meaning you I believe, through Facebook with no response if she wanted to she could open up another Facebook separate from her personal one may be for HDSA just a comment I guess.

[Louise Vetter] 1:16:19: Yes and I have committed myself to responding to all emails that I received to my personal email address at work so that's lvetter@hdsa.org and I am not on Facebook for professional, for HDSA so I recognized that folks had asked me that question before, but I make

myself very available through email and HDSA does have its own Facebook page of course, but I encouraged folks to reach out to make through email.

[Melissa Biliardi] 1:16:53: Yes, I would also like to comment on that basically I have the same experience if I reach out to you directly at your HDSA website email. I typically get in touch with her immediately if I try to go through info or another route then I found that I don't get the message to her so I would say definitely go directly to her email. I have another question (doorbell) two more questions, okay.

This one is from Lillian, this is my personal experience that there is staff is top in the national office who are rude to the chapter volunteers, why has HDSA been so offensive to the HD families who are also chapter volunteers?

[Louise Vetter] 1:17:45: I am very concerned by that of something that I've work hard to do with the staff is improved our customer service to make sure that we take every call seriously and that we're being supportive and compassionate in our responses, so certainly it something that I do take seriously and I would encourage folks to reach out to me with specific concerns because it is something that I think is incredibly important and you're right..I mean we need to be - we're family service organization and we need to reflect that in everything we do.

[Melissa Biliardi] 1:18:17: Okay, here's another question, many blog posters are posting anonymously because they're afraid of HDSA, why is that? And that's from Janet in California.

[Louise Vetter] 1:18:31: I was unaware that this was a practice and I don't know why folks would be afraid of HDSA. We are not a vindictive organization and we want to work collaboratively with everyone dedicated to finding a cure and providing treatment and help to families and so you know again I don't know why that would be happening and I certainly invite folks to work with me when they have questions and want more support.

[Melissa Biliardi] 1:19:00: Alrighty, anymore question out there? I am getting ready to wrap this up here.

Looks like we're running out of time so I just want to thank Louise for coming on today to Help 4 HD news channel...been a little brutal but I think it's all good in the long run. We all need to communicate and it looks like we have another question coming in. Okay, can we send you more questions and can we how do we follow up with you on some of the things that were mentioned?

[Louise Vetter] 1:19:37: It's a great question and I'm glad I have an opportunity to just wrap up with how folks can reach out to us. First, I just want to mention that the hdsa.org website has our strategic plan and has a lot of the resources and tools that I've mentioned so I encouraged folks to visit that website. In terms of reaching out to me personally, there are two really good ways to do it. One is

to info@hdsa.org, there are many staff who make sure that that gets responded to very quickly and that the emails make it to me when they are addressed to me so that's info@hdsa.org. You could also send an email to lveeter@hdsa.org and both ways are great ways to get responses.

[Melissa Biliardi] 1:20:25: Great, (doorbell) okay we're still getting questions hope you can stick with this here Louise. Why did you say that you are the premier organization, there are so many organizations out there?

[Louise Vetter] 1:20:37: In our strategic plan, I'm sorry one of our goals is to be the premier resource, so we want folks when they are looking for information on HD to know that they can comment to HDSA for really good comprehensive information. It's an internal goal of the organizations and that's something that we'll work hard to make sure that we're providing as much information as possible, but that's why it's on strategic plan and that's why it's written that way.

[Melissa Biliardi] 1:21:13: Okay, I think we have one more (doorbell) this is from Marisa, ask her if she'll be attending the walk not the convention itself, but the walk during the convention last year she seemed to skip out on it, it's all about being united isn't it?

[Louise Vetter] 1:21:29: That's a great point and I'm not sure if it was Marisa or someone else who had written me directly about this. I actually had a meeting at the time of the Team Hope Walk during last year's convention and I'll make sure that I do not have a meeting at that same time, so I look forward to seeing folks in Las Vegas for that Team Hope Walk.

[Melissa Biliardi] 1:21:48: Very good, Very good, well I think we're about wrapping it up now, so you can get to your meeting and I think we have one more, okay so here's a thing let's go ahead and wrap it up, but I think if we have more questions I would like to send them to you if you don't mind?

[Louise Vetter] 1:22:08: No that's fine.

(Crosstalk) [Melissa Biliardi] 1:22:10: In that way, you know I have a quick questions before we close up here, your strategic plan you had quite a number of people respond to it, how is that going and when will we be able to see the final?

[Louise Vetter] 1:22:28: I'm glad you asked that question and we received tons of community feedback in January and February on the strategic plan. We've just completed going through all that feedback with the board to make some changes to the plan to reflects that, so we're finalizing the plan and actually there's a meeting coming up in a few weeks to give us the final stamp of approval, so once it's done we'll roll it out to the community and everyone will know, so I look forward and coming very soon.

[Melissa Biliardi] 1:22:58: Well thank you, thank you Louise and please pay attention to the pleas of the community. I think they won't stop until they get what they want.

[Louise Vetter] 1:23:09: I heard everything on tonight's call, I assure you. I encouraged folks to send me emails and Melissa thanks again for putting me in touch with everyone.

[Melissa Biliardi] 1:23:17: Great, well I think we'll conclude this show tonight. I just want to thank you Louise and everyone for joining us today. It's all about communication, information and then we can go forward with our journey and our mission, so contact me at the Help4HD-International.org, find us on Facebook Help for HD come back and listen to the recorded episode and please send it out here, your colleagues, friends and family get the free app on the road Help for HD at iTunes and android markets and visit WeHaveAFace.org and Deshalamar.org. Goodnight everyone and look for future Help for HD News Programs it will be listed and thanks again everyone, goodnight.

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