June 2010
The ALS Association, Michigan Chapter
Patient Services News Special points of interest: Advocacy Photo Album! Details of Negative Trial Result for Talampanel Read Mary Kay Duffie’s Story Mark your calendar for Summer Seminars
Advocacy Day Update!
Volume 1 Issue 3
Caption describing picture or graphic.
Inside this issue: Advocacy Day Photos
2
Talampanel Trial Update
3
Coping with a Loved One’s Illness Seminar
3
Stem Cell Research Seminar
4
Meet Joe Kulwicki, New ALSA Staff
4
Calendar
5
Featured Family
6
We just returned from an exciting three days in Washington DC for ALS Advocacy. Advocates from across the country met with members of congress and told their ALS story and urged them to join us as champions against Lou Gehrig’s Disease. The first priority included appropriating $10 million to continue the National ALS Registry at the Centers for Disease Control and Prevention. The Administration and Congress made the establishment of a national ALS patient registry a top priority through the enactment of the ALS Registry Act in 2008 and by appropriating funding to develop and implement the registry, including $6 million in FY 2010. These actions have enabled the CDC/ATSDR to launch the first phase of the registry, including creating a national ALS registry website that is expected to enroll patients with ALS
beginning in 2010. When fully operational the registry will identify, for the first time, the number of cases of ALS in the U.S. and collect data that is urgently needed to help find the causes of the disease and how it can be treated, prevented and, ultimately, cured. However, increased funding is necessary in FY 201 1 to fully implement the registry, allow people with ALS across the country to self enroll in the registry and enable the CDC to coordinate with other federal agencies to identify ALS cases in all 50 states through existing databases. Moreover, funding will facilitate the implementation of strategies that ensure the registry captures ALS cases in rural and urban underserved areas. These steps are vital elements of implementing the ALS Registry Act and fulfilling the promise of the registry to advance public
health initiatives, epidemiologic studies, and research into biomarkers, risk factors, and clinical studies that identify new treatments for the disease. The second priority was to appropriate $15 million to continue the ALS Research Program (ALSRP) at the Department of Defense (DOD). Studies supported by the DOD, Department of Veterans Affairs, Harvard University and the Institute of Medicine among others repeatedly have found that military veterans, regardless of branch or era of service, are approximately twice as likely to die from Lou Gehrig's Disease as those who have not served in the military. These findings were most recently confirmed by a September 2009 study funded by the VA and the National Institutes of Health. Continued on page 2….
Patient Services News Volume 1 Issue 3
Page 2 Advocacy Continued... In order to support our nation's military heroes in the fight against ALS, Congress and the Department of Defense established the ALS Research Program in FY 2007. Unlike many other research programs, which focus on basic science, the ALSRP is promoting translational research and is specifically designed to find new treatments for ALS, a disease for which an effective treatment currently does not exist. The ALSRP also is funding the best science as funding is provided
on a competitive grant basis and projects are peer reviewed. While Congress has continued to appropriate funding for the ALSRP, including $7.5 million in FY 2010, the current funding level will only be able to support approximately 3 to 4 projects. Yet over 90 were submitted to the program in FY 2009. As a result, under the current level more than 95% of submitted projects will not receive funding. Opportunities to discover and deliver a treatment to veterans will be lost, leaving them - and
all people living with the disease - with no effective treatment option. By appropriating $15 million for the ALSRP in FY2011, Congress can continue this vital program and take steps to ensure that our nation continues to fight for our veterans just as they fought for us. We delivered and shared PALS and CALS stories at each meeting, this personal touch brought a human factor and urgency to our efforts. A heartfelt thanks to all who shared stories!
“We delivered and shared PALS and CALS stories at each meeting, this personal touch brought a human factor and urgency to our efforts.�
Page 3
Coping with a Loved One’s Illness Seminar June 14th in Troy
Join us as Ms. Keolebogile Semphadile shares her thoughts on coping with a loved one’s illness.
On Monday June 14th, The ALS Association Michigan Chapter will welcome Keolebogile Semphadile, an international doctoral student from Oakland University, as she presents a seminar on coping mechanisms for loved one’s of the seriously ill. Ms. Semphadile will discuss strategies for effective coping, self care and stages of grief during her presentation
at the Chapter’s Troy office. Ms. Semphadile has over twenty years experience as a professional counselor in her native country of Botswana in Africa. She comes to our Chapter as part of her doctoral training at Oakland University and is pleased to share her extensive experience with our patients and families in this educational seminar.
The seminar will begin at 6:30pm and all are welcome to attend. There is no cost to attend this seminar, but please RSVP to Kristen Munyan, Patient Services Coordinator if you are able to join us. The Troy office is located at 675 E. Big Beaver, Suite 207. We are located on the north side of Big Beaver between Rochester & Livernois.
Talampanel Trial Concluded with Negative Results A Research Update from The ALS Association’s National Office, May 19, 2010 On May 17, global pharmaceutical company Teva announced the results of the recently completed trial of Talampanel for people with ALS. The results were conclusively negative.
of progression in participants with ALS treated with placebo or either of the 2 doses of the study medication. While there were more side effects seen in participants treated with the Talampanel, the dropout rates were very similar in all groups, making the negative results more convincing.
The ALS Functional Rating scale, a tool used to assess changes in physical functioning in people with ALS over time, was the primary outcome measure; both this measure and the other measures investigated showed no difference in the rate
While this is a very disappointing result for patients, caregivers, and physicians, the convincing nature of the results provides a clear answer to the effectiveness of this treatment for people with ALS. Fortunately, there are many other
promising drugs now being tested; it is important for all to remain hopeful and committed to finding improved therapies for ALS. Thanks are due to the patients who participated in the study, as well as to Teva Pharmaceutical Industries Ltd. For funding the study and the clinical investigators who worked so diligently to provide high quality data so that a clear result was obtained. For more information on research being conducted to improve therapies for ALS, see The ALS Association website.
“It is important for all to remain hopeful and committed to finding improved therapies for ALS”
Patient Services News Volume 1 Issue 3
Page 4 Stem Cell Therapy Informational Session in Grand Rapids June On June 24th The ALS Association Michigan Chapter will host Dr. Merritt K. Taylor at the Mary Free Bed ALS 2nd Floor Conference Room as he shares information regarding stem cell research and ALS. Dr. Taylor is Assistant Professor at Grand Valley State University. He will give a presentation on stem cell research and answer questions from attendees. Please RSVP to Denise at
616-459-1900. The presentation will address “Current understanding of the cell biology of ALS and related therapeutic approaches.� The discussion will include: What insights do scientists have about how ALS occurs? Scientists have been attempting to understand what mechanisms have been disrupted in ALS and recent findings will be reviewed.
What kind of related therapies are being tested or considered to prevent or stop the disease? Scientists and clinicians have been using insights from cell biology to develop therapeutic approaches towards ALS and the current status of some of these approaches will be discussed.
Come to the June 24th Seminar for information on stem cell research and ALS.
Meet our Newest Staff Member: Joe Kulwicki, Development Coordinator Joe Kulwicki is the newest member of The ALS Association, Michigan Chapter Team. Joe joined us in May as the Development Coordinator in the Troy office. Joe will be providing leadership to Gears & Beers, metro Detroit Walk to Defeat ALS, Jackson Walk to Defeat
ALS, grants, and third party events. He brings a wealth of knowledge from his previous role as a executive with the Boy Scouts. Joe is an Eagle Scout, lives in Sterling Heights, and is committed to the ALS mission. Joe grew up in the metro-Detroit, going to
Bishop Foley High School and receiving his degree in Communications from Oakland University. Joe is currently considering working on an MBA and a CFRE. Joe looks forward to meeting entire ALSA family and is excited to start this new adventure.
Augmentative Communication Technology Seminars Create Awareness On May 19th and 20th, The ALS Association Michigan Chapter hosted seminars featuring demonstrations of speech generating equipment that can help improve communication for patients with ALS. A range of different systems was demonstrated, including eye gaze technology that allows a person to control their speech devise with just their eye movements. We were fortunate enough to have Joel Allchin and Kelly Petri of Dyna-
vox as well as Artie Knack, Speech and Language Pathologist for the Henry A. Hoenselaar ALS Clinic at Henry Ford Hospital in Detroit share their expertise with PALS and families. Thank you to our fantastic speakers as well as to the PALS and families who joined us for these seminars. Your feedback is always appreciated. kristen@alsa-michigan.org. For more information about speech devices please contact your ALS clinic or call Kristen or Denise.
Kelly Petri of Dynavox, demonstrates the VMax, a speech generating device that can be controlled with a touch screen or eye movements.
Page 5
June 2010
Sun
Mon
6
7
Tue
Wed
Thu
Fri
Sat
1
2
3
4
5
8
9
10
11
12
Kalamazoo SG 7-8:30pm
Call In SG 2-3pm
16
17
18
19
24 Survivor’s Lunch 11:301pm , Gaylord SG 2:304:30pm, Stem Cell Research Seminar, Grand Rapids 6:30-8pm
25
26
13
14
15
Grand Rapids SG 2-4pm
Coping with a Loved One’s Illness—Troy, 6:30-8pm
Call in SG 6:30-7:30pm
20
21
22
23
29
30
Bay City SG 6:30-8pm
27
28
Gears & Beers Ride to Cure ALS, Ann Arbor
Troy SG 6:30-8pm
Fenton SG 6:30-8pm Ann Arbor SG 6:308pm
Educational Conferences Scheduled Throughout Summer
June 14th - Coping with a Loved One’s Illness, Featuring Keolebogile Semphadile, Professional Counselor and international doctoral student from Oakland University. 6:30-8:00pm The ALS Association Michigan Chapter Troy Office June 24th - Stem Cell Research , Featuring Dr. Merritt K. Taylor, Assistant Professor in Biomedical Sciences and Cell and Molecular Biology at Grand Valley State University. 6:30 - 8:00pm, Mary Free Bed Rehabilitation Hospital, 2nd Floor Conference Room July 15th - Hospice Services in ALS, Featuring In-House Hospice, 6:30 - 8:00pm, Brighton Lion’s Club August 4th - Respiratory Issues, Featuring Mark Orlikowski, LRT Branch Manager Airway Hospital, 6:30-8:00pm, Munson Community Health Center Meeting Room All sessions are free to attend. Please contact Denise or Kristen to RSVP.
Patient Services News Volume 1 Issue 3
Page 6 A Lifetime Accomplishment : Mary Kay Duffy My name is Mary Kay and I am a 74 year old ALS patient living in northern Michigan. Five years ago something strange happened. It seemed as though all my friends were going deaf at the same time. No matter what I said people would ask me to repeat, sometimes more than once. I didn’t realize my speech was so slurred people could not understand what I was saying. Not long after that I noticed that my face was beginning to droop. I didn’t make a connection between the two conditions. Looking at my face I thought I had suffered a little stroke. Since I seemed in good health I didn’t give it a second thought. Next I started drooling. Again I didn’t pay any attention, thinking it was a sign of old age. It would be close to a year later before I was to learn the real cause of my symptoms. I was still not a believer, but a trip to Mayo convinced me that I did have ALS. My ALS is bulbar which makes it impossible for me to speak or swallow. The long trip home from Mayo gave me many hours to ponder my predicament. I thought of my friend who had died of ALS twenty some years ago. He was totally paralyzed and unable to speak, lying in bed in a nursing home. That thought struck fear in my heart, and also made me realize that I had a limited time in which to finish anything important that I had not yet accomplished. I made some decisions and wrote my final list before I reached home. I figured it was my life, my disease, and I could make my own rules. I would not dwell on ALS, nor would I talk about it constantly. If people asked me how I was doing I would say it was a good or bad day. Nothing more. I would resign from the organizations I had been involved with and spend what time I
“I did finish the book….A major undertaking even for someone in good health. For me it was a lifetime accomplishment and a miracle.
had left with my family and friends. I would get my Trust in order, finish the book I was writing, and have an elevator installed in our home. I started praying that God would keep me calm, positive and productive. I soon changed that prayer asking to be calm, positive and patient. My disease affected many people in addition to myself. Learning how to be patient with them is not always easy. Along the way I learned some important, and often disappointing Mary Kay Duffy with her book, Torch lessons. My biggest disappointment Lake the History of Wah-Wha-Go-Ning. was how little knowledge the medical community had about ALS. That set me off on a mission to educate as weaken but my legs are strong. I am many people as possible. I learned hooked up to a system twenty four hours a that I had to be pro-active and creaday that keeps my trach well humidified. tive. After all, this was my only body Another machine is hooked up in the evewe were talking about and it was very ning to feed me by food pump over night. I important to educate myself, not just need to use a nebulizer four times a day about the many unpleasant symptoms, and an airway clearance vest twice a day. but also about what equipment was Each morning and evening someone has to available and what kinds of help was suction out my trach to keep my lungs available in our part of Michigan. I built clear, a job that takes about an hour and a myself a network of helping people half. It seems my life is controlled by equipincluding Denise George my ALS ment, care, and helping people. Michigan Patient Services CoordinaMy symptoms have gotten worse in the tor, and a file of equipment informapast five years but I try to keep my attitude tion. I was ready. When it became too the same, praying to be calm, positive and difficult for me to swallow I knew I patient. Each day my life is a challenge. I needed to be fed by tube. My family like to look at it like an adventure in which I and friends put together a website get to make my own decisions. where they could sign up to come help Back at the time I was diagnosed with feed me. I talked with my pharmacist ALS one of the things on my list that I about which pills could be ground up to wanted to accomplish was to finish the go in my PEG Tube. When I reached book I was writing. Having the book to work the point that I was regurgitating the on was a real blessing for me, giving my food from the tube which caused chokmind a positive place to be every day so I ing and aspirating I knew I needed a didn’t have time to worry about my ALS. tracheotomy. When my muscles failed Keeping busy and positive has been a very to the point that my mouth would no important part of remaining in somewhat longer open wide enough to brush my good health both physically and mentally. I teeth comfortably and I was unable to did finish the book. In 433 pages Torch spit out toothpaste I started using a Lake, the History of Was-Wah-Go-Ning child size toothbrush and mouthwash. includes 673 maps, drawings and old phoToothpaste made way too much foam tographs and a story covering 10,000 years and mouthwash was easier to deal of life in the area where I live. A major unwith. My educational mission for both dertaking even for someone in good health. myself and others goes on constantly. For me it was a lifetime accomplishment Today my arms are beginning to and a miracle.
Page 7 Piece by Piece Awareness Campaign Makes a Powerful Statement Advocates and PALS who made the trip to Washington DC last month had the chance to take in a new sight— the Piece by Piece Awareness Campaign, a major ALS Awareness campaign developed by the Florida Chapter. The visual impact of the display is immensely powerful. It includes over 200 mannequin “pieces” that each display an epitaph representing a Floridian who has been diagnosed with the disease. Floridian families spon-
sored mannequins to include their loved ones as part of the display. The message is simple, but gripping “ALS is stealing our loved ones piece by piece. Then it steals their lives”. The display has traveled to more than 20 locations and draws attention wherever it goes. In Washington DC, it was a powerful reminder to all those who had come for ALS Advocacy day why we were there and what was still to be
accomplished. It also provided a visual display of the devastation of ALS for lawmakers. It was proudly displayed in the Naval Yard area of the capital for the entirety of the ALS Association’s Advocacy Day efforts. For more information on the Piece by Piece Awareness Campaign, visit www.stealingpieces.com.
Recommended Reading: Passages in Caregiving At a recent Troy Support Group meeting one of our Caregivers of an ALS recommended the book “Passages in Caregiving” by Gail Sheehy. This particular caregiver mentioned the soothing nature of the book. “Passages in Caregiving” provides an informational and calming guide for caregivers, assuring them that although their circumstances are unexpected, they are not insurmountable. Sheehy seeks to provide
caregivers the feeling that they are not alone in the caregiving journey. “Passages in Caregiving” also provides an expansive list of resources and advocacy groups that are available to help family caregivers. Although not specific to ALS, the book provides a good guide for any family member faced with the monumental task of caregiving for a loved one who is ill.
“Passages in Caregiving” by Gail Sheehy, was recommended at the Troy Support Group and is available at Costco for $15.19.
Virtual Vigil Lights up Chapter Website Light a virtual candle in honor or in memory.
With May being ALS Awareness month, The ALS Association, Michigan Chapter held a candlelight vigil in honor and in memory of those whose lives have been effected by ALS. All last month family and friends had the ability to log on to the Chapter’s website and set a candle aglow in
honor of their loved one. Our homepage featured a link to follow where a donation could be made and a virtual candle lit. Within days, rows of virtual candles flickered with stories of those whom they were lit for beside them. Family members and friends wrote notes to loved ones who’d lost their battle with
ALS and words of encouragement to those still fighting. May was ALS Awareness Month. Thank you to everyone who lit a virtual candle for sharing your thoughts and for spreading awareness. It was amazing to see your candles light up our website. We hope to continue your awareness efforts year round.
Fighting Lou Gehrig’s disease on Every Front.
The ALS Association, Michigan Chapter 675 E. Big Beaver, Suite 207 Troy, MI 48083 678 Front Street, Suite 159 Grand Rapids, MI 49504
Our Mission: To lead the fight to cure ALS through global cutting edge research, cutting-edge research, and to empower people with Lou Gehrig’s disease and their families to live fuller lives by providing them with compassionate care and support.
Find us on the web: www.alsa-michigan.org