The ALS Messenger F i gh t i ng Lo u Geh r ig ’ s Di s e as e i n Mi ch ig a n
Seotember 2010
Volume 1, Issue 6
Counting Down to The Walk to Defeat ALS Inside this issue:
Keo’s Back from Botswana
11 Days Until…Jackson • 11 Days Until…Traverse City 18 Days Until…Portage 25 Days Until…Detroit • 33 Days Until…Grand Rapids 2
Meet Robbi! CaddyAm raises funds for ALS
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ALS Drug Candidate in development ALS Association Announces New Research Grants
Chapter Calendar
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5
6 7
Registered Teams Roster 8
Scientists find new genetic component Order your ALS Awareness Wristbands!
Detroit Riverfront Conservancy
Ah-Nab-Awen Park
Traverse City Walk to Defeat ALS Saturday, September 11, 2010
Jackson Walk to Defeat ALS Saturday, September 11, 2010
Civic Center Park
Ella Sharp Park
Portage Walk to Defeat ALS Saturday, September 18, 2010 Celery Flats
Virtual Walk to Defeat ALS Anytime Anywhere
The 2010 Walk to Defeat ALS is here. Join us as thousands across the state Michigan Walk to Defeat ALS. The Walk to Defeat ALS is a day of HOPE, day of REMEMBERANCE, and a day to raise money to help get us one step closer to finding a CURE for Lou Gehrigs Disease. Teams are already making a difference in their local communities by raising dollars for ALS in creative ways::
Available
Feeding Tube Care
Grand Rapids Walk to Defeat ALS Sunday, October 03, 2010
Visit www.WalkToDefeatALS.org to register your team TODAY!
Wheelchair Van
Head Trauma and ALS
Detroit Walk to Defeat ALS Saturday, September 25, 2010
9 10
- $5 Jeans Days at Work - Letter Writing Campaigns - Lemonade Stands - Tennis Matches
- Bake Sales - Car Washes - Facebook
Let us know how our walk team can support you. Most importantly, spread the work about why you are walking. Share with others the name and story of the individual you are working for.
Robbie Banfill • Grand Rapids, Portage, Traverse City • rbanfill@alsa-michigan.org • 616-459-1900 Joe Kulwicki • Detroit, Jackson, Virtual • jkulwicki@alsa-michigan.org • 866-927-CURE Marie Tominna • Detroit • DetroitWalk@alsa-michigan.org • 866-927-CURE
Last year over 150 Walk to Defeat ALS™ teams participated across the State of Michigan. Please consider joining The ALS Association in 2010 as a walk team or as an individual walker.
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Meet Our Staff: Robbie Banfill, Special Events Coordinator Robbie Banfill came to the ALS Association, Michigan Chapter a little over two years ago after spending time as a stay at home mom to her son. Working out of the Grand Rapids office, Robbie is our Special Events Coordinator, overseeing many events throughout the year including the Grand Rapids, Portage and Traverse City Walks to Defeat ALS, Rock and Rumble Motorcycle Ride
“There are times when the emotional or physical burden of ALS can demand all of a family’s focus, and we understand. “
for ALS, Caddy Jam Benefit Concert, CaddyAm Golf Tournament for ALS in addition to helping virtual walkers and lending a hand with events on the east side of the state. Well loved by Chapter staff for her technical savvy, Robbie is constantly in motion and never without a smile. When she ’ s not busy planning an event or helping the team, Robbie
can be found working in her garden, volunteering at her church or walking her two boxer mixes. Robbie is passionate about helping our Michigan PALS and has said that since coming to ALSA, she can ’ t imagine leaving the non-profit world. Thank you Robbie for your hard work and dedication to our PALS. We are lucky to have you on the team!
Robbie Banfill Special Events Coordinator Grand Rapids Office
Walk When You are Ready, Seek Resources Now This month you may notice a lot of information about our upcoming Walks to Defeat ALS. While these are exciting, wonderful days that can bring families together for the cause and inspire hope, we understand that not everyone is ready to walk with us this year. There are times
when the emotional or physical burden of ALS can demand all of a family’s focus, and we understand. We want you to know that while we hope you’ll walk with us, participating in the Walk is in no way required to receive assistance through our Patient Services Program. If
you and your family would like to find out more information about the Walk to Defeat ALS, we invite you to call or email our offices. As always, if there is anything we can do assist you on your journey with ALS, please contact your Patient Services Coordinator anytime!
Troy Support Group Welcome Guest Moderator back from Botswana Our Troy Support Group is happy to welcome Ms. Keolebogile Semphadile, an international doctoral student studying at Oakland University, back from her summer in her native country of Botswana, Africa. Keo was kind enough to offer the excellent and well-received ―Coping with A Loved One’s Illness‖ Seminar in the spring and has graciously agreed to return to the Michigan Chapter this fall as a guest moderator at our Troy Support Groups. Keo will address a new topic related to coping and well-being each month throughout the fall. Keo has over 20 years experience as a professional counselor and is currently pursing her PhD in Counseling with a specialty in Greif and Loss. She notes that while she hopes to teach our PALS and families more about stress, coping and grief, that the experience of working with the chapter is helping her learn more about her own feelings these concepts. If you would like to join us for one of Keo’s sessions, please let Kristen know you are able to attend so we can ensure we have enough space to accomdate everyone. You can reach Kristen at 248-680-6540 or at kristen@alsa-michigan.org.
Volume 1, Issue 6
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Benefits for Veterans with ALS Military veterans diagnosed with ALS who have served at least 90 continuous days on active duty will be considered service connected for ALS. This is the case regardless of when or where a veteran served in the military and regardless of the length of time between discharge from the military and a diagnosis of ALS. If you are a military veteran with ALS, you may be eligible to receive significant health and disability benefits from the Department of Veterans Affairs (VA). That’s because on September 23, 2008, the Department of Veterans Affairs established a presumption of service connection for ALS. This means that military veterans with ALS may automatically be eligible for benefits that can include: monthly disability compensation, adaptive housing grants, education assistance, and full health care to name a few. The ALS Association helped to lead the fight for this policy and we now are working to ensure that every veteran with ALS can access these vital benefits as quickly as possible. Eligibility: In general, to qualify for benefits a veteran must have a diagnosis of ALS and must have served on active duty for at least 90 continuous days. Veterans with ALS can qualify for benefits regardless of where (domestically or abroad) or when they served in the military and regardless of when they were diagnosed with the disease following military service. Survivors and Families: Surviving spouses and families also may be eligible for benefits even if a veteran with ALS passed away years or even decades prior to implementation of the ALS regulations in 2008. Benefits for survivors can include monthly compensation and medical benefits among others. Information and Assistance: To learn more about these vital benefits, including answers to frequently asked questions, eligibility requirements, and how to apply for benefits, please visit The ALS Association’s website at www.alsa.org/policy/veterans.cfm.
If you are a veteran with questions about your benefits, please contact Kristen at 248-680-6540 or Denise at 616-459-1900
ALS Drug Candidate to Enter Stage 3 Program in 2011 The drug was shown to have a favorable effect on extending survival.
This week an announcement was made by Biogen Idec and Knopp Neurosciences that they have entered into an exclusive licensing agreement under which Biogen Idec with develop and commercialize KNS-760704 (dexpramipexole). The drug was show to have a favorable effect in preserving motor function and extending survival in patients with Amyotrophic Lateral Scerlosis. The drug has received orphan drug designation from the FDA as well as Fast Track Designation. In the Phase 2 study, the drug was found to be generally well tolerated. Biogen Idec hopes to begin a Phase 3 program of the drug in early 2011. For more information about this development, visit http://www.medicalnewstoday.com/ articles/198522.php.
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The ALS Messenger
ALS Association Announces New Research Grants The ALS Association, Michigan Chapter was excited to learn that a new cycle of grants were funded by The ALS Association to contribute to the search for meaningful treatments and eventually a cure for ALS. This article can be found in its entirety at http://www.alsa.org/news/article.cfm?id=1666&CFID=6657493&CFTOKEN=fc602820c2f24b43-7C33E1C0188B-2E62-806186710117324B The ALS Association has announced newly-funded research grants for the August 2010 cycle. Our TREAT ALS Portfolio (Translational Research Advancing Therapies for ALS) is a research endeavor enabling important research to progress from the laboratory to the bedside. The focus of the program is to support novel ideas, build tools, partner with industry to identify new potential therapies and support the infrastructure for clinical trials, with the goal to find meaningful treatments for ALS and a cure. In addition, through the Milton Safenowitz Post-doctoral Fellowship program, young scientists are encouraged to focus their interest in ALS research. New research studies funded this year will focus on areas of stem cell research, genetics, therapy development, biomarkers and neuroinflammation. Three new Milton Safenowitz Postdoctoral fellows will focus on the genes recently identified for familial ALS, TDP43 and FUS; new techniques to identify genes for familial ALS; and a novel triple transgenic mouse to identify the role of inflammation in ALS. Descriptions of the twelve funded projects are available on the ALSA National website at http://www.alsa.org/news/ article.cfm?id=1666&CFID=6657493&CFTOKEN=fc602820c2f24b43-7C33E1C0-188B-2E62-806186710117324B. Descriptions of two of the awarded grant proposals are detailed below.
Novel Surgical Approaches to Stem Cell Transplantation for ALS Clive Svendsen, Ph.D. Cedar-Sinai, Los Angeles, CA Presently there is one clinical trial at Emory University injecting stem cells produced by the company Neuralstem into the spinal cord of patients with ALS. This project uses a very invasive but accurate injection method where a frame is placed on the patient under deep anesthesia and a large portion of the spine is exposed in order to target the appropriate region for transplantation. This study, however, uses a much simpler and non invasive approach for stem cell delivery based on a modified lumbar puncture technique. An outer guide needle is positioned in close proximity to the spinal cord, and an inner needle containing the cells is pushed under imaging guidance into the target area and cells are then injected. The investigators have developed a clinical grade neural stem cell line that secretes a powerful growth factor, GDNF. They plan to inject these cells using this procedure in a number of pigs under conditions where the data can be used for presentation to the FDA and then progression to a clinical trial. Bone marrow-derived cells as gene delivery vehicles in ALS Charles Krieger, Simon Fraser University, British Columbia, Canada Fabio M.V. Rossi, Biomedical Research Center, University of British Columbia, Canada The use of bone marrow-derived cells as a novel therapeutic delivery system has considerable promise in the treatment of ALS. Bone marrow-derived cells can be injected into the circulation, and there is evidence from pre-clinical studies that these cells are capable of entering the brain and spinal cord under some conditions. The investigators’ previous work has shown that bone marrow cells enter the brain and spinal cord in an animal model of ALS. In this work they will engineer the population of bone marrow cells that enter the central nervous system to produce growth factors such as vascular-endothelial growth factor (VEGF) within the nervous system to permit delivery of growth factors directly to brain and spinal cord. They anticipate that these growth factors will aid in the survival of diseased neurons. They will identify which bone marrow-derived cell types enter the nervous system so that we can restrict the production of growth factors only to the specific bone marrow population that enters the nervous system. Knowing the relevant cell populations will allow them to restrict production of the secreted growth substances which will minimize the adverse effects of using the engineered cells.
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September Chapter Calendar Sun
5
Mon
6
Tue
7
Wed
Thu
Fri
Sat
1
2
3
4
8
9 Call In 2-3
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11
Troy SG 6:30-8pm
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13
14
Grand Rapids SG 2-4pm
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15
Kalamazoo SG 7-8:30pm
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20
21 Call-In 6:307:30
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27 Flint SG 6:30- 28 8pm
23 Survivors Lunch
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Gaylord SG 6:308pm
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18 Portage Walk to Defeat ALS
George Clark from HandyMan Matters presenting
Bay City SG 6:30 -8pm
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16
Jackson & Traverse City Walk to Defeat ALS
25 Detroit Walk to Defeat ALS
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Wheelchair Accessible Van Available through Generous Donation A result of a one PALS’ incredible generosity, The ALS Association, Michigan Chapter is able to announce the availability of a 1995 Plymouth Voyager wheelchair accessible van for private donation to one of our Michigan PALS. The van has 123,133 miles. The van has a ramp that is powered by a switch on the side of the van. It has a lowered floor with air bags that raise it to driving height when put into gear. Due to lack of use, the van has a leak in its fuel line. Whomever receives this van would need to incur the cost of this repair, in additional to all other expenses associated with the transfer and subsequent ownership of the vehicle. If you are interested in being the recipient of this donation, please email kristen@alsa-michigan.org or call the Troy office at 248-680-6540 for an application for consideration. Applications will be accepted until 5pm on Wednesday September 8th. An application must be submitted for consideration. The recipient will be determined based on need and notified by September 15th.
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Respiratory Issues Conference: October 28, 2010
Respiratory Issues and Equipment presented by Airway Oxygen Inc. Mary Free Bed Rehabilitation Hospital 2nd floor conference room October 28st 6:30pm-8:00pm Please RSVP to Denise George at denise@alsa-michigan.org or 616-459-1900 by October 21, 2010.
Researchers Investigate Head Trauma & ALS “More research using a greater number of cases are required to produce conclusive results.”
Researchers from Boston University are publishing a new study in the Journal of Neuropathology and Experimental Neurology on the relationship of head trauma and amyotrophic lateral sclerosis (ALS). The researchers found toxic proteins in the spinal cords of the three athletes. Those same proteins have been found in the brains of athletes with chronic traumatic encephalopathy (CTE), a disease linked to head injuries that causes cognitive decline, abnormal behavior and dementia. Previous studies have linked TAR DNA-binding protein (TDP-43) to some familial forms of the disease, and although etiology of sporadic ALS is unknown, it has long been suspected to involve a complex interaction be-
tween multiple genetic and environmental risk factors. Among the many environmental factors that have been considered as possible triggers of the neurodegenerative cascade in ALS are a history of trauma to the brain and spinal cord, participation in varsity athletics and a slim physique, and strenuous physical activity. A New York Times article suggests that brain trauma can mimic ALS, and that perhaps Lou Gehrig may not have had the disease that bears his name. ALS Association Chief Scientist Lucie Bruijn is quoted in the article as saying, “It’s extremely interesting - it builds a more interesting picture, but what this all exactly means about how the disease plays out re-
quires further investigation.” A further ALS Association publication notes that while patients with ALS have evidence of motor neuron degeneration, patients with CTE do not. They believe Lou Gehrig did in fact have ALS, as he demonstrated clear motor neuron disease. This new study adds to the body of knowledge surrounding motor neuron disease, and points out that more research using a greater number of cases are required to produce conclusive results. To read the full New York Times article, visit http:// www.nytimes.com/2010/0 8/18/ sports/18gehrig.html? _r=1&emc=na
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Michigan Offers Extraordinary ALS Care The following clinic is also ALS Patients living in Henry J. Hoenselaar Clinic Michigan have the ability Henry Ford Hospital recognized by The ALS Assoto choose between sev- Neurology K-11 ciation: eral excellent ALS cen- 2799 West Grand Blvd ters to visit for their multi- Detroit, MI 48202 The MSU at Mary Free Bed disciplinary clinical care. 313-916-2835 Rehabilitation Hospital With two certified centers 360 Lafayette Suite 308 of excellence and another The University of Michigan Grand Rapids, MI 49503 Health System clinic going through the 1914/0316 Taubman Center 616-493-9727 process, there are many 1500 E. Medical Center Dr venues for treatment in Ann Arbor, MI 48109 Michigan. For more infor- 734-936-9020 mation on the clinic nearest to you, please contact your Patient Services Co- ALS Association Certified CentersSM are medical facilities ordinator . that have been certified by The Association as distinguished regional institutions recognized as the best in the Michigan is home to the field with regard to knowledge of and experience with ALS following certified centers:
Advice from the Trenches: Feeding Tube Care
“A feeding tube should be completely comfortable.”
Sandra Lesher Stuban is an RN who was a 38-year old Lieutenant Colonel in the Army when she was diagnosed with ALS. She’s the author of ―The Butcher’s Daughter: The Story of an Army Nurse with ALS,‖ in which she describes her journey openly and honestly. Although she is completely paralyzed and uses a ventilator, she lives an active life as a writer, nursing leader and mother of a teenage son. Q: I am having more difficulty swallowing. I think I will soon need a feeding tube. But I am nervous and feel like I am losing my fight against ALS. Do you have any advice? A: A feeding tube, also known as a PEG (percutaneous endoscopic gastrostomy) or g-tube (gastric tube), is actually your way to win this one battle against ALS. ALS isn’t defeating you, rather you are defying its paralyzing effects by using a simple comeback – the feeding
tube. You can also look at a feeding tube as a pair of glasses. You could do without it but why make yourself miserable. Here are some general tips for living well with a feeding tube. I am an advocate of keeping things simple. I know some people insist on pureeing the same food the family eats. However the same family mealtime dynamics can occur whatever the food choice. Therefore I recommend a liquid total nutrition meal such as Isocal, Nutren, Osmolite, and others. Plus it’s much easier for your loved one. Caring for a feeding tube is very easy. Simply mix a few drops of liquid antibacterial soap with warm water then use a Q-tip to clean the skin immediately beside the tube. Using tap
water and Q-tips, remove the soapy fluid. And finally dry the area with dry Q-tips. Do this every day. You can use apply gauze around the tube, but I suggest not using tape. The gauze will stay in place if the split is on the bottom side of the tube. If you have a length of tube lying on your abdomen, I find it convenient to loop the tube in a loose knot when not being used. This keeps it from inadvertently being pulled during transfers. As a precaution, it’s best to take an acid reducer. It’s very easy for stomach acid to enter the tube tract. A feeding tube should be completely comfortable. If you feel burning or pain, this may be the cause.
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Thank You to All of 2010 Walk to Defeat ALS Registered Teams! The following teams have committed to participate in one of the 2010 Walk to Defeat ALS locations. Thank you for your dedication to fighting ALS with us! Allens Allies ALSAWest Annie's Hope Athlete's Feat B3 - Beyer's Bodacious Bunch Barbie's Crane Train Benny's Buddies BHS Alumni Rally for Lynn Blaze Man BlueWater Technologies Bouma-JJ's Foot Soldiers Brian's Bullpen Chase Bank - Suburban Detroit Group Chris' Crusaders Chuck's Commando's Compuware Conly's for a Cure Connie's Clique Craig's Crew/Miss Mattawan Scholarship Program Curt's Crusaders Dawn's Divas Debbie Gran's Girls Gryffindor for the Cure Harriet's Helpers Jean's Team Jeffrey Pate vs. Lou Gehrigs Disease Jeffs Gang Joseph's Angels Julie's Street Walkers Ken's Friends Kids for a Cure Lake Michigan Credit Union-Joggin for Joe Lake Orion Early Childhood Program Mama's Girls Mary's Girls Maui Time Metro-West Appraisal Co. Miracle Awareness Team
GR DT PO GR GR GR DT GR PO DT GR PO DT GR DT DT DT GR PO JK GR DT DT PO PO DT VW DT JK PO DT DT GR DT TC DT DT DT GR
Myrna,s Legacy One Step at a Time Outliers Against ALS Pardee for PALS Peaches ~N~ Creame Peggy's Pals Poma's Posse Quicken Loans Roger's Dodgers Ruthie's Warriors Ruthie's Warriors Sallys BARn on a mission Sally's Footprints Sophia's Sidekicks Spunkie Ankie Strides for Stuif Team Dale Team GR Team Jana Wood Team Mary Lou Team Moceri Team Pablo Team Ratliff Team Regis TEAM REOCH II Team Rhythm Pointe Team Sharon Johnson Team Taggart Team Tison Team Troy Team Troy Team Ureel T's Team vests hope for a cure Vitas Walking for Larry Walt's Winning Warriors WCCCD Bookstore Willi/Gould Gang
TC DT DT DT DT PO DT DT TC PO GR DT GR DT TC PO DT GR DT PO DT GR DT DT PO DT GR GR DT DT GR DT PO GR DT GR DT DT PO
Mr. Roger's Friends
PO
Willis/Gould Gang
GR
DT= Detroit Walk; GR= Grand Rapids Walk; PO= Portage Walk; JK= Jackson Walk; TC= Traverse City
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The ALS Messenger
RESEARCH UPDATE: From The ALS Association, National Office August 26, 2010
Study Identifies New Genetic Risk Factor for Lou Gehrig’s Disease An international study led by biologists and neuroscientists from the University of Pennsylvania, published this week in Nature, has identified a new genetic risk factor for amyotrophic lateral sclerosis, which is commonly known as ALS or Lou Gehrig’s disease. Using yeast and fruit fly as simple, yet rapid and powerful models, and then following up with human DNA screening, the team found evidence that mutations in the ataxin 2 gene were a genetic contributor to the disease. More specifically, the study shows that expansions of a run of the amino acid glutamine in ataxin 2 are associated with an increased risk for ALS, with a frequency of 4.7 percent of ALS cases examined. The identification of pathological interactions between ataxin 2 and TDP-43, another ALS-associated disease protein should aid in the development of biomarkers and empower the development of new therapies for this disease. Results of the study were confirmed in fruit fly models, in biochemical analyses, and in human cells, revealing that ataxin 2 is a potent modifier of TDP-43. The study showed that ataxin 2 and TDP-43 interact in animal and cellular models in a manner to promote pathogenesis. ―This is a very exciting study using a novel approach to identify risk factors in ALS,‖ said ALS Association Chief Scientist Lucie Bruijn, Ph.D. ―The association between TDP-43 and ataxin 2 is intriguing and further studies will hopefully shed more light on how these interactions are linked to ALS.‖ The results indicated a link between the proteins and the disease. For example, when the researchers directed expression of TDP-43 to the eye of the fruit fly, a progressive, age-dependent degeneration began. When directed to the motor neurons, flies experienced a progressive loss of motility: the higher the levels of ataxin 2, the greater the toxicity of TDP-43, resulting in more severe degeneration and the less the amount of ataxin 2, the less the toxicity. ―Because reducing ataxin 2 levels in yeast and flies was able to prevent some of the toxic effects of TDP-43, we think that this might be a novel therapeutic target for ALS,‖ said study co-senior author Aaron Gitler, Ph.D., assistant professor of Cell and Developmental Biology at Penn’s School of Medicine. The ataxin 2 gene had previously been implicated in another neurodegenerative disease called spinocerebellar ataxia 2, or SCA2. Ataxin 2 contains a repeated stretch of the amino acid glutamine, abbreviated Q. This tract, called polyQ, is usually short, only about 22 or 23 Qs. However, if the polyQ tract expands to greater than 34 Qs, patients develop SCA2. The new results show that intermediate-length polyQ repeats, between 27 and 33 Qs, longer than normal but shorter than what causes SCA2, increase a person’s risk for developing ALS. Our findings do not mean that if you have 27 Qs or more in your ataxin 2 gene that you will definitely get ALS, only that it increases risk for it,‖ Gitler added. ―However, the identification of a novel and potentially common ALS disease gene from a simple yeast screen, leveraged by the more complex model created in fruit flies, underscores the extraordinary power of yeast and fly as model systems for gaining insight into human disease pathogenesis.‖
The A L S A s so c i a t i o n, M i ch i g a n Cha p t e r 675 E. Big Beaver, Suite 207 Troy MI, 48083
678 Front Street, Suite 159 Grand Rapids, MI 49504
Phone: 248-680-6540 Fax: 248-680-6543 Email: kristen@alsa-michigan.org
616-459-1900 616-459-4522 denise@alsa-michigan.org
FIGHTING LOU GEHRIG’S DISEASE
Create Awareness with an ALS Wristband!
Fighting Lou Gehrig’s Disease red wristbands are available through our offices. These red silicone bands make a unique statement and create awareness. They are available at a recommended donation of $2 per band. Please call your local office for more information on getting your wristband! Troy—248-680-6540 Grand Rapids—616-459-1900
People with ALS and their families come first in everything we do. Our vision is a world without ALS!