Payne in the ALS Client Portfolio by molli payne

Payne In The ALS Molli Payne

ALS has been a disease that has run in my family for years. I can remember my parents telling me about it when my uncle passed when I was 6 and at every family event when a relative was in a wheel chair or with an oxygen tank. This is the disease of the motor neurons or muscles. It slowly kills the nerves (motor neurons) in your muscles and the tissue then wastes away. I myself have a 50% chance of getting this disease and that is why I work with research for this drug and why my family has started the organization Payne in the ALS. My family’s organization is very small but we work with the ALS Therapy Development Institute and the MDA ALS Association. These two organizations work with research and are one on one with the patients. The reason I have chosen to work with my family’s organization this semester is because of much work it needs and my passion for finding a cure for this disease. The Payne In The ALS does not have a written mission, but we strive to find a cure to this horrible disease. The mission for ALS TDI is “Secure funding, development treatment, end ALS.” MDA’s mission statement is about finding research to help with any muscle disease developmental research. A lot of our organization’s fundraising and donations go to these two non-for profits. We base a lot of our decisions and fundraising ideas from these two companies. They really are our team’s backbone. The public policy for Payne In The ALS is very generic. This organization does not really go out and support much of anything else and I believe this could also be considered a public relation issue. It’s hard for such a small organization to step out and support another organization in such a small community. This is just an example on what this organization needs to work on.

Payne In The ALS has quite a few public relation issues. This organization is fairly small and is run from Chicago but is primarily based in Amboy IL, with only 2,400 people. With such a big goal in mind, the organization needs to have smaller goals to eventually make that big one. With not even a fully functioning website and relying mostly on social media to announce fundraisers and events, this organization has a long way to go. Another issue our organization has is money. It’s hard to find good supporters and donators when you use the same people year after year and its even worse when you try to raise money mainly in a blue-collar town. Payne In The ALS needs to get out more and be noticed. I know its hard running an organization where a cure to a disease is the goal and a lot of the people you are trying to get to donate, don’t know what the disease actually is. This past super bowl, the Raven’s showed their support with one of their former players and front office employee’s journey with ALS. Trying to team up with big organizations is hard for such a small group to accomplish but I think it would be a great start to help get the organization noticed. I am so passionate about this organization because this disease is so true to my heart. Ever since I have been told about my possible outcome and my family’s history, I have always been in for whatever it takes to end this disease. Watching people go through this and seeing their muscles physically melt away is such a sad thing to watch but gives you great drive and momentum to finding a way to ending their suffering. Reading and finding out how to better this organization is going to be a lot of work this semester, but also a very informative way of teaching me how an organization should be run.

Payne In The ALS Molli Payne

ALS is a disease that affects your nerves in your muscles and slowly the muscles begin to fade away. This can be a slow and painful or it can take a life very fast. This disease has run in my family and for as many generations I can think of. My family has a rare form of the disease that only impacts about 10% of the patients that have ever been diagnosed. You can now be tested for the gene and see what if you are going to get this horrible gene or not. My family runs its own organization called Payne In The ALS. Our non-for-profit is based off of information and events from two major organizations, ALS Therapy Development Institute and Muscular Dystrophy Association. One major challenge that is obvious about my familyâ&#x20AC;&#x2122;s non-for-profit is that its not a huge company. The fact that this organization is based in a very small town gives the non-for-profit a small membership base, a small number of donors, and a small number of people to help volunteer and run events. The organizations small membership numbers is because of where the organization is. Myself and two other cousins live in a major city and actually have begun to run the organization from Chicago. This has been happening for a few years now but has not really changed the membership rate. Most of the loyal members are family relatives and very close family friends. These people help out when they can but this makes it hard to raise money because an organization that is family based and mainly focused in a blue-collar neighborhood is an issue that has to be resolved. Itâ&#x20AC;&#x2122;s hard to raise money for such an expensive disease when most of your donors live in a place where people live paycheck to paycheck. Since most of our donors do have full time jobs, itâ&#x20AC;&#x2122;s hard for our organization to get volunteers and events started. When most of your organizations members work more

then 40 hours a week and have three kids and still have a problem paying the bills, its hard to dedicate time to an organization that has a hard time raising money anyway. The Payne In The ALS does a lot of great events like, The ALS Walk For Life, A Toast To ALS, and the numerous raffles, auctions, golf outings, and cookbook sales. Some of these events raise a bunch of money but are very expensive to attend. With this many issues itâ&#x20AC;&#x2122;s hard for an organization to run smoothly. I believe that to inform more people about this disease and the suffering of its patients, you have to step out of the box. To get our organization member and donor list going up we have to keep having small events where friends can bring friends and spread the word about ALS. Most of the information from the organization is updated on their Facebook page. The organization does have a website but has not been updated since 2010. In order for possible members and donors to take us seriously, you have to update things like this. You have to keep people informed not just using a social network. A few recommendations for my familyâ&#x20AC;&#x2122;s organization is to revamp the website. It is very boring and very dull. When you look at other websites such as ALS TDI its very inviting and grabs your attention. The wording is very short and to the point. Since our organization does update a lot of their information through Facebook, they need to have more likes. Right now the page only has 338 likes and only 6 people have been talking about it. With numbers like this people are not going to take the time to read about it since some of the people who like the page have not even read it. Our family members are big drinkers and big poker players. We have had poker tournaments in the past that have raised a bunch of money but I think that we should have more of them. If we set up a tournament once a month in either Amboy (where most of

the members live) or in Chicago, you could get a great turn out. Since the family does drink a lot of beer maybe the organization could make its our beer or wine and sell and serve it at some of our events. This could also bring more people into our donor list with wineries and brewers around the city. My familyâ&#x20AC;&#x2122;s organization my be small but its very dear to my heart. Watching people you love so much going through such pain drives me to help our organization get out of its slump and raise more money to help find a cure.

Works Cited "ALS Research Organization | ALS Therapy Development Institute." ALS Therapy Development Institute. N.p., n.d. Web. 03 Mar. 2013. "Amyotrophic Lateral Sclerosis | MDA." Muscular Dystrophy Association. N.p., n.d. Web. 03 Mar. 2013. "Payne In The A.L.S. | Facebook." Facebook. N.p., n.d. Web. 03 Mar. 2013. "Payne in the ALS." Payne in the ALS RSS. Word Press and Huzoila, n.d. Web. 03 Mar. 2013. "A Toast to Life : Benefit Fundraiser for ALS." A Toast to Life : Benefit Fundraiser for ALS. N.p., n.d. Web. 03 Mar. 2013.

Payne In The ALS Molli Payne

Watching someone with ALS is heartbreaking. It is hard to sit and watch someone struggle when you know that there is nothing you can do for them, except try to make their life just a little bit easier. As I get older and watch more family members die of this disease I am more passionate in finding a cure! Research for ALS is very expensive and very slim to find. Because this disease can take a life so fast, it is hard for doctors to study the disease. My family gives as much blood and anything that they can to the research center here at Northwestern Memorial hospital. With the help of my family and other families with ALS being hereditary it is easier to study the disease a little bit longer then with a normal case. Another challenge that Payne In The ALS has is small donations and research development. When you have a organization based in such a small town, it is hard to focus and find people that can donate on a regular schedule. Research is very expensive. From the diagnoses of the disease to the end, all of the tests and drugs are very expensive. There is no exact test that says you have the disease. You have to go through X-ray’s, MRI’s, neurological examination, spinal tap, and blood and urine tests. Some of these tests have to be paid out of pocket from people and families that cannot afford it. Years ago Payne In The ALS teamed up with an old Chicago Bear, Dan Hampton and he walked the walk with us. We raised a lot of money and a lot of people bought our team Payne In The ALS t-shirts that year. I think we should try and do this again but with OJ Brigance of the Baltimore Ravens. OJ is now a member of the Raven’s front office but used to play on the team. He was spotlighted when the team went to the super bowl and he is living with ALS. He can no longer talk and relies on a machine to

breathe. This would be great publicity for our organization but also for any ALS organization. We could have OJ â&#x20AC;&#x153;walkâ&#x20AC;? with us and then have a meet and greet and photo opportunity with him after. He can no longer write autographs but we could print out the photos with a quote from OJ on the bottom of the photo. I think people would pay for a chance to meet such an inspiring person and for a chance to raise money for ALS. One of the best ways to find research is through clinical trials. Other ALS organizations offer clinical trials for patients with ALS and doctors test new drugs and new ways to hopefully prolong the disease. With no cure yet and the ending result being death, most patients do these trials to try and help the next patient that has it. Since my uncle is in the process of doing this, our organization should sponsor an obstacle course that could give money to the ALS Association that sponsors a lot of clinical trials. An obstacle course that we could do could be done the same day as the ALS Walk for Life, Walk to defeat ALS walk. The obstacle course could consist of everyday things that are hard to do for a person living with ALS. The obstacles could be using a cane or walker while having your legs tied together or even trying to open a jar with special gloves that make your fingers not being able to move. At the end of each obstacle we could have a specialist talk about ways to prevent these things from happening so fast and to try to prolong these symptoms as long as you can. Doing this during an event with already so many people there, it could raise enough to possible sponsor one clinical trial for one patient. We could charge five dollars to every person that did the obstacle course.

I think that these ideas would be great ways to raise money and support for such a horrible disease. My organization may be small but our passion to find a cure is huge. We try to find every possible way to raise money and help in anyway we can with research. If we used these recommendations, we could possible raise enough to sponsor one clinical trial and to give money for new research. These can help not only one person with ALS, but anyone else in the future that has this horrible disease.

Payne In The ALS Molli Payne

With an organization as small as mine, you seem to have a lot of the same issues. Of course the main issue is money for everything including donations, money for research, and money for different types of clinical trials and money to just help patients with ALS pay for anything. One thing that the organization never really talks about is the lack of money that the non-for-profit takes in. Our organization does not have an official office. We base it out of Amboy IL and my cousin who runs it lives in Lincoln Park. It is hard for her to do actual business and if we do want to do some fundraising, it is hard for her to meet since the two places are so far away. A solution to this would to move the organization to the city because there are more opportunities to help the organization grow and more people to donate. It is not this simple though. With a family that is so involved like mine, you cannot move this to a place that a lot of them have never been too. To fix this issue I think that an â&#x20AC;&#x153;officeâ&#x20AC;? should be made in Amboy and in Chicago. We need a physical place that people can go to learn about new information and even a place where the need to get away or talk to people that are going through the same thing. My great grandmother past away a few years ago and left us her home. This would be a perfect place for a home office. The home is big enough for offices and for a place that people can learn about the disease and talk to people that are or have gone through the disease. This would not take long to set up but before we launch the new office we could have a couple outings to raise money for the office and also get people educated on the disease. One of the outings that we could host is an event or more of a get together that would bring families and individuals closer over the talking about the disease and

learning new things. I mentioned before that we could bring in doctors to talk about new research but I think at an event like this could be the family and even the nurses that have helped out families members through the end of the disease. We could talk about what to expect when the disease comes and how fast it is. We could ask for stories from the audience and ask for their advice through these hard times. This event would take place in Amboy but the organization could bring back Chicago Bear Dan Hampton and have him talk about the disease. We could even have him sign a few footballs and have them auctioned off and they could be given to a child that has a parent dealing with this disease. This event is benefiting the new office but giving away the footballs to children is a positive PR strategy that is going to get our name out there and let people know that we are here to help. Another thing that we could do when the office opens is to host an event where people come and can mingle with people who have gone through the same thing but they can relax and talk about other things but still know that we are there to help. This is an event to let people know that they can come to the office whenever they need to get away from home. When you are living with someone who is dying of a horrible disease you need some time to except the disease but it is also very hard to deal with it. We will have support groups and we could talk about them during this event. People need help coping with the disease and they are manuals and other websites that can tell you how but it is even harder when you are going through it by yourself. We set up support groups to help people with that. Watching someone go through ALS is very painful and I believe that if Payne in the ALS had a physical office it could help people tremendously. People could

come and go whenever they need to know information or to talk to people about what to expect. We will have support groups to help people cope with this awful disease.

Works Cited

"Coping with ALS." Coping. N.p., n.d. Web. 27 Apr. 2013. <http://www.alsresearchcenter.org/patients/coping.php>.

Leo's Story." Dailybulletin.com. N.p., n.d. Web. 27 Apr. 2013. <http://www.dailybulletin.com/leosstory/ci_5013907>.

Payne In The ALS Molli Payne

When you get diagnosed with a disease or a sickness you usually look on the Internet first when you get home from the doctors appointment. You look for organizations that can help you and you look for the best doctors and if they are around where you live. You look to see if there is anyone near you that can help you and your family with what you are dealing with. When you type in ALS the first thing that pops up is a Google definition and the website for the ALS Association. Then there is the Wikipedia definition and then the Mayo Clinic website and other websites for research and hospitals. One thing you do not see is the Payne in the ALS website because it has not been updated since 2011. All we really talk about on the website is the ALS Walk for Life. This is one event that happens every September. We have a page about ALS and a page how to contact the organization and about announcements. The last announcement on the website is about the walk from 2011. There are not even photos from the actual event; this was posted way before the actual walk. The only way that the organization communicates with people is through Facebook. There is no twitter but our Facebook page is updated everyday sometimes even more than once. They talk about up and coming events and other ALS research and ALS news. It is nice that we have a Facebook page but we need more of a social presence and a better website. One way to help put our name out there is building a better website. It is so simply for me to just walk into the portfolio center and I could build it in a very short time. This is one option we could do but we could also take our organization to a school and ask for an intern who is great at graphic design and have them build the

website. This is a great move because it shows that we want to be more involved in schools and we allow internships. We also need to tell more of our story. We have one page that talks about ALS and the kind that runs in our family. I think its great that we tell people about it but we need to show them about it. We need to show more of the events and why we all have a passion for finding a cure. It is hard for people to support something when there is hardly anything for them to base their opinion on. Another thing that we could do to help increase our social presence is adding someone to the team that will update the media outlets at least once a day. We could tweet about events and then tweet from the events. Tweeting from events tells people about it and also gives them a chance to stop by. We can also set up an instagram that will post pictures from events, quotes from patients fighting the disease, and pictures of machines and new research. Instagram is a great way to show people what we are doing to help others. A Pinterest page would be great as well. We could show other stories from other people across the country. We could post about great things to do with your loved ones before the disease takes them over and learn about new research and other stories of how people are coping. Our Facebook page is great; the only thing I would change is trying to get our likes up. We only have 354 likes and only 28 people are talking about it. When people Google ALS we want to be up near the top on the list of organizations. We want to be there to help people and you cannot do that with a website that has not been updated in two years. You want people to look you up and think yes, this is what I need or yes I can donate to them because their story touches

my heart. We want to be a top choice for helping people and a number one choice for people to donate too. We want to be that one step from finding a cure.

Works Cited Becker, Connie. Facebook. N.p., 27 Apr. 2013. Web. 27 Apr. 2013. <https://www.facebook.com/PayneInTheALS?fref=ts>. Payne in the ALS. N.p., 2011. Web. <http://payneintheals.com/>.

Payne in the ALS Molli Payne

ALS is a disease that affects around 5,600 Americans per year. It is a disease that affects every two in 100,000 people and anybody could have this at any given time. For some reason, ALS is not publicized in the news very often. When people look at these numbers they think that yes, people are dying but with a disease like cancer that affects almost everybody, I will give to that, or yes that is a lot of people but the shooting that just happened or the hurricane is something better to give my money too. Most people who donate to any ALS fund or ALS organization is because they know about the disease or because a family member or friend has died from it. A lot of celebrities, athletes, political people, or companies very rarely talk about ALS. This needs to change. ALS can affect anyone. It does not matter male or female or your racial background it will just strike and really with no reason. ALS causes muscle weakness and then you lose the function of your muscles. There is one drug out there that can prolong the life of ALS but that is the closest we have come to a cure. On January 28th, 2013 the NFL came out with a public service announcement about finding a cure for ALS. Former Saints player Steve Gleason has been diagnosed with ALS and wanted to help spread the word to find a cure. He had a friend email other players in the NFL about his idea for a public service announcement and within two months, there were film crews sent around the country to film top football players for the P.S.A. The announcement itself explains the disease in a very straight forward, gruesome way with Gleason finishing it with ‘Let’s find a cure for ALS.’ This is not the only publicity the disease got around super bowl time. Ravens’ personal inspiration O.J.

Brigance was there as well talking about his story with ALS. This has been the only publicity from the National Football League about this disease. I think that with the help of my familyâ&#x20AC;&#x2122;s organization and others we can bring the disease to the surface. We can use athletes to talk about the disease and give awareness. May is ALS awareness month so more news and stories will be coming out all month long. I think that if we got a petition or sent another letter to Gleason, we could get the NFL to put out another public service announcement about the disease. We could also get in contact with the NBA, MLB, and the NHL to help put out these commercials to be seen more than just once and on YouTube. If we had these athletes give money to these foundations and charities and to other research and threw celebrations after, more people would give money. In Chicago a lot of the professional athletes have their own charities and foundations. I think that if we contacted one of them and have them sponsor a â&#x20AC;&#x153;sport dayâ&#x20AC;?, this could raise some money and keep people aware about the disease. We could choose a basketball player, baseball, football and hockey player for the day. We could rent out a baseball field one day and have that athlete give kids lessons on the game. All the money could go to finding a cure but it also puts our name in the media with local athletes showing that they care about local causes. This could be done for every major sport and have children take part in each of these activities. We could live tweet from all of these events and tell people about how the Sox or the Bears care about ALS and why you should too. People who have been Bears fans their entire lives really do what the team does, they give to who the team gives to and they eat where the team does. These people are diehard fans and will do what the team

tells them to do. All we need is just one player or owner or even team support to talk about ALS or tell a story about it and people will start researching and learning about the disease. All it takes is for one person to tell another and to just spread the word to help find a cure.

Works Cited "The ALS Association Launches Online and Social Media Campaign during May, ALS Awareness Month." The ALS Association Launches Online and Social Media Campaign during May, ALS Awareness Month. N.p., n.d. Web. 02 May 2013. <http://www.multivu.com/mnr/57711-als-association-alsa-online-socialmedia-als-awareness-month-may-2013>. Battista, Judy. "In Starkest Terms, Players Share Message About A.L.S." The Fifth Down In Starkest Terms Players Share Message About ALS Comments. N.p., 28 Jan. 2013. Web. 02 May 2013. <http://fifthdown.blogs.nytimes.com/2013/01/28/in-starkest-terms-playersshare-message-about-a-l-s/?smid=fb-share>. "Tell Your Story." Facts You Should Know. N.p., n.d. Web. 02 May 2013. <http://www.alsa.org/about-als/facts-you-should-know.html

Payne in the ALS Molli Payne

As we get to the middle of ALS awareness month you start to read more stories and articles about past ALS patients and current battling the disease. Of course all of these stories do not have a great ending but they are tear-jerking and very heartfelt. I have seen a lot of these stories from the beginning and I have seen the struggle in patient’s eyes. I am someone who is very passionate about finding a cure for ALS and that it needs to be done sooner rather than later. With research costing as much as it does and with such a great discovery found just a few weeks ago we need to help raise money faster! With my family as such a huge opportunity, I think that we need to put together a collection of stories about our family and friends that have had the disease and their relative’s memories of what has happened. I think that a book being put together would be a great idea and would raise such awareness and a lot of money for the disease. I got this idea from another patient with ALS. She is not a member of the family but I read her story online and instantly felt great heartache and joy for her family. Susan Spencer-Wendel has written a book titled “Until I Say Goodbye: My Year of Living with Joy.” She is a mother of three living with ALS and is going down her bucket list with her friends and family. The TV spot that she had was just so sad because you saw how she was happy for her kids but yet still so sad that she was leaving them so soon. She writes in the book things for her children when they get older and great reminders for them. Another ALS book that is just amazing is

â&#x20AC;&#x153;Tuesdayâ&#x20AC;&#x2122;s with Morrie.â&#x20AC;? This book is one of my favorites and other moving story of a friend struggling with ALS. Writing a book with current family members that are living with the disease is a great way for them to communicate with the family after they have passed on. Our family book could be stories from family members, family members living with the disease, and special tricks we have learned along the way. We could add to it throughout the years for future family members that have the gene and do not know it yet. We could also write another book with stories and letters that patients around the world want their family members to see. We could have patients write down what it feels like and what to expect with what is coming. It could be more of an ALS tell-all for future patients to read. Yes you get told what the disease is like from doctors but they have not really lived the pain that you have to endure will living with this. All of the proceeds from the two books would go to ALS research and also to the family members struggling to make ends meet while their loved ones are laying in the hospital bed. No one has ever published a book like this before because it is a hard thing to talk about and you really never know how much time you are going to have when you are dealing with this disease. This book could help put ALS on the map and give more awareness to the disease. More people can read these books and feel like they are part of our family and try to know what it is like to know that one day you may be in the same shoes as your

past relatives. It gives a bigger picture of what the disease is really like from the inside and how you need to deal with it mentally and physically.

Works Cited "Mom of 3 with ALS Lives out Bucket List 'with Joy'" TODAY. N.p., n.d. Web. 13 May 2013. <http://www.today.com/news/mom-3-als-lives-out-bucket-list-joy1C8841978>.

"Tuesdays With Morrie." Tuesdays With Morrie. N.p., n.d. Web. 13 May 2013. <http://www.randomhouse.com/features/morrie/>.

Payne in the ALS Molli Payne

With ALS awareness month still underway, I think this is the perfect time to spread the word about the disease and how it affects the body. In towns across the nation there are community organizations that stand outside and give money to ALS. You mostly see this in small towns but it is a great way to show support for a great cause. I think that since our familyâ&#x20AC;&#x2122;s organization has most of their events in the summer or the fall that we should plan one for the month of May. With May being the month of warm weather and school being let out I think it is a perfect time for a benefit bash. During this benefit bash we can have different types of booths and stations set up so people can come from all over and see what kinds of different things are family does. We have family members who raise horses, other ones raise pigs, other family members own their own businesses, and a lot of others are great cooks. The Payne family loves to karaoke and this would be a great thing to end the night with. We could start off the bash with different activities for the kids and different kinds of food being sold throughout the booths. We could also have our annual bags tournament during this time as well. It is a great opportunity to celebrate the lives of others and to raise money for a cure. Another event that the family could do is a big four-wheeler race. A lot of our family lives on farms and a lot of them race dirt bikes and four wheelers. We could build a track on one of the family members property and sell tickets to this race. We could sponsor all of the racers in future races so other people will see our name and use us if they ever need help. We can have this be an all day thing starting with little kids and dirty bikes before the big quad race at the end of the night.

Each of the drivers would pay a certain amount and in return we would run them in a newsletter and sponsor them for other local races. This is a different way of advertisements. It will get peopleâ&#x20AC;&#x2122;s attention when they see Payne in the ALS on the back of someoneâ&#x20AC;&#x2122;s suit rather then Rockstar or Mountain Dew like normal people see. It will bring in other potential clients and potential donors. We never know who make actually want to donate to such a special cause. With a big family like mine there is really no need to say no to any kind of advertising because our family has so many personalities and faces that you could use anything to show support for ALS. I think that this could be another great idea and it could be very doable. When placing an organization in a small town where everyone knows someone who does this, it is a great way for getting our organization name out there and for spreading awareness for a cure!