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Upcoming Events: |
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2010
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Previous Events: |
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2010
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2009
- November6, 2009: Tyler's 3rd Annual Benefit and Walk for CMT Research
- September 26, 2009: Grace's Courage Crusade 2nd Annual Dinner Party
- August 22, 2009: CMT Kids Day at the National Aviary in Pittsburgh
- July 27, 2009: Fourth Annual CMT Golf Tournament
- July 9-11, 2009: Third International CMT Consortium Meeting
- June 28, 2009: GCC's Rock 'n Run for CMT Research
- June 14, 2009: 8th Annual Swim for the Cure
- May 30, 2009: Allentown, PA, Patient-Family Conference
- April 29, 2009: 2nd Annual Honor a STAR, Be a STAR Gala
- April 18, 2009: Erie, PA, Patient-Family Conference
- March 14, 2009: Get Jazzed for a Cure!
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2008
- November 8, 2008: West Coast CMT Physician/Patient/Family Conference
- August 30, 2008: Grinnell Student Swims Marathon to Raise Awareness
- July 28, 2008: Third Annual CMT Golf Tournament
- July 25, 2008: Grace’s Courage Crusade Dine and Dance for the Cure
- June 11, 2008: Honor a Star, Be a Star Dinner
- June 8, 2008: 7th Annual "Swim for the Cure"
- May 29, 2008: CMTA Patient-Family Conference, Johnstown, PA
- April 14-17, 2008: Annual Meeting of the AAN
- April 11-12, 2008: CMT Patient Fair, Detroit, MI
- April 5, 2008: CMTA Patient-Family Conference, Philadelphia, PA
- March 15, 2008: Ethan’s Walk for the Cure, Mount Aloysius College, Cresson, PA
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2007
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2006
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2005
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Again this year, along with his daughter Jaime and some friends, CMTA Board Member Steve O'Donnell swam the Chesapeake to raise money to find a cure for Charcot-Marie-Tooth disease, a hereditary neuromuscular disorder that slowly cripples those affected. With your support, Steve hopes to make the 2010 Swim for the Cure the most successful ever.
We admire Steve's courage and determination in meeting the challenges he faces because of his CMT, and we are doing everything we can to find an effective therapy or cure. That includes making sure that every penny of every dollar you donate in Steve's honor is actually used to fund research by the best scientists in the world.
Through your generous support of Steve and all those who "swim for the cure," you will enable the CMTA to continue funding this important research and bring us that much closer to our goal of a world without CMT.
Please click here if you would like to make a donation in support of Steve's effort. Thank you.
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Save the date for the 3rd Annual Honor a STAR. Be a STAR. Gala
with special guests Joe and Sue Paterno
For more information and tickets, please visit www.honorastarbeastar.com.
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 | Tyler's Walk 2009 |
On Friday, November 6, 2009, more than 270 people joined us for an evening of fun and friendship in honor of Tyler Lopez at 115 Bourbon Street.
We had live rock and blues music all night, and tickets included great food, beer, wine and soft drinks. There was also a raffle, silent auction, and 50-50.
Tyler's walk for CMT Research was also held at 10:00 a.m. on Sunday, November 8.
If you would like to make sponsorship contribution for Tyler and his 2009 walk, you may still do so by visiting Tyler's 3rd.
All proceeds will go to the Charcot-Marie-Tooth Association research fund, and we thank you very much for your support. |
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On September 26, 2009, we were joined by more than 240 people for an evening of fun and friendship in honor of Grace Caldarone in the Grand Ballroom of The Village Inn, One Beach Street, Narragensett, RI.
Dinner was catered by Amalfi Restaurant, and there was also a dessert auction, balloon raffle and silent auction.
All proceeds from the dinner will go to the Charcot-Marie-Tooth Association research fund.
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This event was held at the National Aviary in Pittsburgh. Children of all ages were welcome, and this was a perfect opportunity for children to connect with other children with CMT. It also gave parents a chance to connect with other parents for support and information.
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CMTA Chairman Patrick Livney hosted the Fourth Annual CMT Golf Tournament on July 27, 2009, at the Merit Club. All proceeds from the event will go to support the CMTA and the STAR initiative to help find the cure for this debilitating disorder.
Last year's Third Annual CMT Golf Tournament was a great success and the event raised an amazing $220,000. Mr. Livney hopes this year's event will be even more successful.
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CMTA Medical Advisory Board
Chairman Michael Shy
(standing, at right) with some
of the more than 100 top
CMT researchers at the
Consortium Meeting in Antwerp.
(Click here to view full group.)
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The Charcot-Marie-Tooth Association remains committed to partnering with international organizations and researchers to ensure a global commitment to our core mission—A World without CMT—and once again, the CMTA was a proud sponsor of the Third International CMT Consortium Meeting which was held in Antwerpen, Belgium from July 9-11, 2009.
Following the format of previous International CMT Meetings, participants had the goal of exchanging new clinical and scientific information and, equally important, to start or strengthen collaborations between research and patient services organizations.
The CMTA was represented at the meeting by CEO David Hall and Medical Advisory Board members Dr. Michael Shy and Dr. Stephen Scherer.
Joining the CMTA team were more than 100 clinicians and investigators from 12 countries around the world, along with representatives from CMT patient organizations in the United Kingdom, Holland, Belgium, France, Czech Republic, Italy, and Australia. 50 lectures and 50 posters were presented that focused on the clinical, diagnostic and basic research of CMT neuropathies. Click here to download the program, abstracts, and list of participants.
At the conclusion of the meeting, Dr. Michael Shy announced that the CMTA will be hosting the Fourth International CMT Consortium Meeting in 2011 in Washington, DC. Details of the meeting will be made available in the future.
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Hundreds of people joined us on Sunday, June 28, 2009, for a day of family fun from 10:00 a.m. to 5:00 p.m. at Ninigret Park, Old Post Road, Charlestown, RI.
Local bands played all day, 115 runners competed in tbe 5K road race, and kids of all ages enjoyed face painting, crafts, pony rides, bouncy tent, dunk tank, popcorn, cotton candy and more!
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Once again, Steve O'Donnell swam the Chesapeake Bay Challenge to raise money to find a cure for Charcot-Marie-Tooth disease, a hereditary neuromuscular disorder that slowly cripples those affected. Together with his daughter Jaime and friends, he was swimming to make the 2009 Swim for the Cure the most successful ever.
We admire Steve's courage and determination in meeting the challenges he faces because of his CMT, and we are doing everything we can to find an effective therapy or cure. That includes making sure that every penny of every dollar you donate in Steve's honor is actually used to fund research by the best scientists in the world.
Through your generous support of Steve and all those who "swim for the cure," you have enabled the CMTA to continue funding this important research and brought us that much closer to our goal of a world without CMT.
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Made possible by a grant from Pennsylvania to the CMTA, a patient-family conference on Charcot-Marie-Tooth Disorders was held on May 30, 2009, at the Kasych Pavilion, Lehigh Valley Health Network, Cedar Crest Site, Allentown, PA.
More than 120 people attended the conference, which began with a presentation by Dr. Glenn Mackin, neurologist and Director of the LVHN Neuromuscular Diseases Center, who discussed the diagnosis and evaluation of CMT. At 10:00 am, the new Chief Executive Officer of the CMTA, David Hall, discussed the research efforts and direction of the organization. The final morning presentation was by Gary Michalowski, C-Ped, CFO, BOCP, who discussed the options in bracing for CMT patients.
At 1:00 pm, the afternoon program began with a presentation by Allyn Danni, P.T. from Lehigh Valley Health Network, Trexlertown, who discussed exercises and therapies for CMT patients. At 2:00 pm, Dr. Sara Bouraee discussed foot and ankle corrections and surgeries for the CMT foot. The final presentation was by Betsy Green, O.T. from Healthworks, who discussed aids for daily living and care of the CMT hand.
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Event Honoring Joe and Sue Paterno for Their Lifetime of Achievement Generates over $350,000 for CMT Research
 | Sue Paterno and CMTA CEO Dave Hall look on
as “Joe Pa” tells our guests, “We can cure it.
It will take a little money.... The good news
is we have the money. The bad news
is it's in your pocket.” |
The Charcot-Marie-Tooth Association’s second annual “Honor a Star. Be a Star.” Gala recognizing Joe and Sue Paterno for a lifetime of achievement raised a record amount of over $350,000 at the Mandarin Oriental Hotel in New York City on April 29. Proceeds from the Gala will be used to support the CMTA’s Strategy to Accelerate Research (STAR™), an ambitious initiative that has been created to develop new treatments for Charcot-Marie-Tooth disorder (CMT).
Nearly 200 people were in attendance as Hall of Fame Football Coach Joe Paterno and his wife Sue were honored for their generous contributions to the CMTA. Joe Paterno has served as national spokesperson for the CMTA over the past several years.
“The CMTA is proud to have Joe as its official spokesperson,” said David Hall, Chief Executive Officer of the CMTA, “and we’re extremely grateful and appreciative of all that Joe and Sue have done not just for the CMTA, but for countless other organizations and communities.”
Highlights of the evening included opening and closing vocal performances by 13-year-old CMT patient Amy de Silva, a moving video-tribute, and the presentation of the 2009 “Honor a Star. Be a Star.” Award to the Paternos.
Guests also received the latest scientific updates on medical advances in CMT from leading STAR researchers Drs. Michael Shy and Steven Scherer, who announced that the first STAR project—the creation of a cell line for use in high-throughput screening at the NIH—has been completed and that the cells have been delivered to the NIH.
We were also fortunate, through the generosity of our sponsors, to be able to invite several support group leaders and CMTA members from the greater NY area. One member, attending his first CMTA event, captured the enthusiasm generated by the Paternos and the STAR news when he said, “What you are doing here is remarkable, and I am definitely going to be involved from now on.” |
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Made possible by a grant from Pennsylvania to the CMTA, a patient-family conference on Charcot-Marie-Tooth Disorders was held on Saturday, April 18, 2009, at the Shriners Hospital for Children, 1645 West Eighth Street, Erie, PA 16505.
The conference included presentations by Dr. Michael Shy, Chairman of the CMTA's Medical Advisory Board and Director of the Wayne State University CMT Clinic, who discussed the characteristics and causes of CMT as well as the current research being done on the disorder; Bobby Rainey, DPT, who discussed physical therapies for CMT and rehabilitation programs; Mandy Anderson, OT, who discussed hand problems and efficient ways to handle tasks of daily living; and David Hall, Chief Executive Officer of the CMTA, who spoke about the ambitious plans for the future of the CMTA and the programs which will benefit its members.
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The Charcot-Marie-Tooth Association presented "Get Jazzed for a Cure!"
featuring the Father John D'Amico Trio and vocalist Ella Csircsu
 | Father John D'Amico |
Our guests joined Honorary Chair Dr. Steven Scherer and Honored Guest Dr. Michael Shy for an evening of fun and entertainment as we raised money for CMT research.
The evening began with a Reception in the elegant Montrose Mansion and included a performance by Amy de Silva, a presentation by chocolatiers Dee Owen and Jane Kirsch, and a silent auction.
All proceeds from "Jazzed" benefit the CMTA Strategy to Accelerate Research (STAR).
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About the Conference...
On November 8, 2008, more than 250 people joined us in Palo Alto, California, and had the opportunity to:
- Learn more about CMT, including symptoms, diagnosis and current therapies.
- Hear talks by renowned experts who specialize in the diagnosis and treatment of CMT.
- Talk with CMT patients, friends and families.
- Meet the expert medical staff from the Wayne State University CMT Clinic at Detroit, Michigan.
- Speak with experienced professionals from the CMTA and members of its Board of Directors.
- Become familiar with STAR, the CMTA’s ambitious research initiative that holds promise for effective therapies for some types of CMT within 3-5 years and a possible cure within 10 years.
DVD Is Now Available
The conference was a huge success, and the CMTA has published a DVD of the presentations. If you would like to preview and order the DVD, please click here.
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- Patrick Livney, Chairman and President, CMTA Board of Directors
- Dr. Michael Shy, Director, CMT Clinic Wayne State University, Detroit, MI, and Chairman, CMTA Medical Advisory Board
- Sean McKale, Orthotist, Rehabilitation Institute of Michigan, Detroit, MI
- Carly Siskind & Shawna Feely, Genetic Counselors, Wayne State CMT Clinic, Detroit, MI
- Dr. Bill J. Metaxas, DPM, Silicon Valley Podiatry Group, San Jose, CA
- Dr. Paul Billings, CEO, CELLectiveDx, Mountain View, CA
- Gretchen Glick, CMTUS
- Jennifer Kaubish, PT, Kaubish Physical Therapy, San Jose, CA
- Pat Dreibelbis, CMTA Director of Program Services, and Dana Schwertfeger, CMTA Director of Member Services
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Disabled Swimmer Inspires Many with Marathon Swim
 | David Paige practices for his
marathon swim. |
At the age of eight, David Paige was diagnosed with a mysterious, degenerative neurological disease called Charcot-Marie-Tooth (CMT). Doctors told him that by the time he turned 20 he wouldn't be able to write his own name or walk on his own. Since then, Paige has done everything he can to prove his doctors wrong, and he's done it again. On Saturday, Aug. 30, Paige swam a 26.2 mile marathon at Grinnell College in Grinnell, IA to raise awareness for CMT.
CMT is the most commonly inherited neurological disorder affecting an estimated 2.6 million people, however it is frequently misdiagnosed. The disease causes a gradual loss of normal use of feet/legs and hands/arms. The nerves to Paige's extremities are degenerating and the muscles in his arms and legs are rapidly weakening. Many patients also have some loss of sensory nerve function. Eventually David will need to give up sports and will require walking assistance and leg braces, but for now, the athlete inside him hopes to inspire others.
His motivation, he says, is not to be the next Michael Phelps but to inspire other disabled young people, and to raise awareness about his disease. He entered the Obermiller Pool at 7 a.m. in front of friends, family and peers not to win a gold medal, but to demonstrate that even people facing difficult challenges can make a difference.
Click here to learn how you can support Dave's effort to raise awareness and funds for CMT research.
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CMTA Chairman Patrick Livney will host the Third Annual CMT Golf Tournament on July 28, 2008, at the Merit Club. All proceeds from the event will go to support the CMTA and the STAR initiative to help find the cure for this debilitating disorder.
Last year's Second Annual CMT Golf Tournament was a great success and the event raised an amazing $250,000. Mr. Livney hopes this year's event will be even more successful.
The tournament is limited to 20 foursomes, so if you would like to sign up or make a donation, please call 1-800-606-2682 today. |
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More than 200 people joined us on July 25, 2008, from 6:00 to 10:00 p.m. for an evening of dining and dancing in honor of Grace Caldarone in the Bella Riviera Room of the West Valley Inn, 4 Blossom Street, West Warwick, RI.
There were raffles and a silent auction, and music was provided by a live DJ.
All proceeds from the dinner benefitted the Charcot-Marie-Tooth Association research fund.
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1st Annual CMTA STAR Dinner Honors Hall of Fame Coach Joe Paterno
 The Charcot-Marie-Tooth Association held the First Annual STAR Dinner, honoring Hall of Fame Coach Joe Paterno, on June 11, 2008, at The Nittany Lion Inn in State College, PA. In addition to honoring Coach Paterno, the Chernega, Livney, and Scarduzio families were recognized for their contributions in support of CMT research. |
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 Once again, Steve O'Donnell swam in the Chesapeake Bay Challenge to raise money to find a cure for Charcot-Marie-Tooth disease, a hereditary neuromuscular disorder that slowly cripples those affected. Last year's "Swim for the Cure" raised over $190,000. That set a new record, but Steve and the other swimmers (pictured at right) hope to make the 2008 Swim for the Cure even more successful.
We admire Steve's courage and determination in meeting the challenges he faces because of his CMT, and we are doing everything we can to find an effective therapy or cure. That includes making sure that every penny of every dollar you donate is actually used to fund promising research.
You can still support Steve and the 2008 swim team. Please click here to donate online now or click here to download and print a form you can mail with your check.
Through your generous support of Steve and all those who "swim for the cure," you will enable the CMTA to continue funding this important research. Thank you.
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In conjuction with the John P. Murtha Neuroscience and Pain Institute, the CMTA held a Patient-Family Conference at the Holiday Inn on Market Street in Johnstown, PA, on Thursday, May 29, 2008.
This year's CMT program walked patients, family members, and healthcare providers through current treatment options and devices available for patients with CMT. It also highlighted current research. Click here to view a brochure with the full program.
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CMTA Executive Director Charles Hagins and Chicago Regional Membership Director Alan Pappalardo staffed a booth and provided attending neurologists with information on CMT and the work of the CMTA.
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A Midwestern Patient Fair was held at Wayne State University on Saturday, April 12, 2008. There were plenary talks as well as workshops, and attendees were also able to tour the research laboratories in the Elliman Building.
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The Charcot-Marie-Tooth Association held a Patient-Family Conference on April 5, 2008, from 9:00 a.m to 3:00 p.m. on the campus of the University of Pennsylvania. More than 160 people attended.
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On March 15, 2008, 5-year-old Ethan Spade and his Circle of Friends held a one-mile "Walk for the Cure" at Mount Aloysius College in Cresson, PA, to raise money for CMT research.
Ethan, who has CMT, currently wears braces on both legs in order to avoid problems with tightened muscles during the day. He also goes for physical therapy and has a workout routine that he does at home every day.
If you’d like to make a donation in support of Ethan, please visit Ethan’s webpage at www.charcot-marie-tooth.org/Ethan.
Ethan, and everyone affected by CMT, thanks you for your support!
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Nearly 150 researchers and clinicians attended the Second European/North American CMT Consortium sponsored by The Charcot-Marie-Tooth Association.
The Meeting took place Wednesday through Friday, July 18-20, 2007, at the Snowbird Ski and Summer Resort in Utah, and was an official satellite of the Biannual Meeting of the Peripheral Nerve Society, which also took place at Snowbird from July 14-18, 2007.
Following the format of previous meetings of the European and North American Consortia, the emphasis was on exchanging information and encouraging collaboration among European, North American, and other investigators around the world.
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Once again, Steve O’Donnell has swum the Chesapeake Bay Challenge to raise money to find a cure for Charcot-Marie-Tooth disease, a hereditary neuromuscular disorder that slowly cripples those affected. Last year’s "Swim for the Cure" raised just under $100,000. Together with his friends and family, Steve and "Team Julia" from New Jersey have joined together to make the 2007 Swim for the Cure the most successful ever. They have already raised over $141,000!
We admire Steve’s courage and determination in meeting the challenges he faces because of his CMT, and we are doing everything we can to find an effective therapy or cure. That includes making sure that every penny of every dollar you donate is actually used to fund promising research.
Although the swim took place on June 10, 2007, you can still make a donation in support of Steve and the 2007 swim team. Please click here to donate online now or click here to download and print a form you can mail with your check.
Through your generous support of Steve, Team Julia ’07, and all those who "swim for the cure," you will enable the CMTA to continue funding this important research. Thank you.
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Made possible by a $250,000 grant from Pennsylvania to the CMTA, a patient-family conference on Charcot-Marie-Tooth Disorders was held on Saturday, June 9, 2007, at the Holiday Inn, 2750 Mosside Blvd., Monroeville, PA.
Morning presentations were made by Dr. Chitharajan Rao (Neurologist, UPMC), Sandy Thompson (MDA Health Services Coordinator, Pittsburgh Office), and Dr. Mary Louise Russell (Physiatrist, CHP).
The afternoon program continued with presentations by Scott Ospiak (Athena Diagnostics), Kathi Brandfass (Physical Therapist, Center for Rehab Services), and Dr. William DeMayo (Physiatrist, CMT Clinic, Johnstown).
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One of the main topics to be dealt with in a number of lectures is treatment of neuropathic pain which is usually caused by peripheral neuropathy.
For information, contact: ISAS International Seminars
PO Box 574
Jerusalem 91004, Israel
Tel: ++972-2-652-0574
Fax: ++972-2-6520558
conventions@isas.co.il
http://www.neurophysiology-symposium.com
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The 5th Annual Wayne State University Charcot-Marie-Tooth Charity Golf Tournament was held on Tuesday, June 27, 2006, at the Bay Pointe Golf Club in West Bloomfield, Michigan.
Proceeds of the tournament will benefit the CMT Clinic at Wayne State University.
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 On June 11, 2006, Steve O’Donnell and his children, Sean and Jaime, made the 5th Annual "Swim for the Cure" to help fund research and find a cure for Charcot-Marie-Tooth disease (CMT), a hereditary neuromuscular disorder that slowly cripples 1 in 2,500 people.
Steve, who has CMT, is a member of the Board of Directors of the Charcot-Marie-Tooth Association, the national organization for CMT. Since 1983, the CMTA has been generating the resources to find a cure, creating awareness and improving the quality if life for those affected by Charcot-Marie-Tooth.
 This year, our effort to create awareness of CMT took off when Penn State Football Coach Joe Paterno, NCAA Coach of the Year and recent inductee in the College Football Hall of Fame, became the spokesman for the CMTA’s Pennsylvania State-wide Awareness Campaign. Coach Paterno volunteered his services for TV, radio and print ads discussing CMT and encouraging Pennsylvanians to participate in a research study conducted by the John P. Murtha Neuroscience and Pain Institute. (Select a format to view a Paterno TV spot: Windows Media Player or QuickTime Player).
Our vision is a world without CMT, and we have recently embarked on an aggressive research strategy to fund serious projects submitted by the world’s leading scientists.
Each of these projects, when approved by our Medical Advisory Board, requires the CMTA to commit $300,000 over a 3-year period, and the CMTA also funds post-doctorate fellowships of $35,000 each to encourage scientists to study CMT.
In 2005, 14 research grants were reviewed and 2 received funding commitments in the amount of $600,000 over 3 years. This year, the CMTA received 15 research grant requests and 1 post doctorate fellowship application.
The CMTA depends entirely on donations from individuals to fund these grant requests, and supporters of the O’Donnell family’s swims have already made a major contribution to the research effort.
Last year alone, the "Swim for the Cure" raised over $46,000. This year, the total was over $98,000!
Your donations will go a long way to continue our research efforts. Steve O’Donnell and the entire CMTA thank you for giving generously. |
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Made possible by a $250,000 grant from Pennsylvania to the CMTA, a patient-family conference on Charcot-Marie-Tooth Disorders was held on Wednesday, May 24, 2006, at the fitness center of the Milton Hershey Medical Center, Hershey, PA.
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The CMTA was an exhibitor at the 58th Annual Meeting of the American Academy of Neurology. The meeting brought together more than 10,000 neurology professionals at the world’s largest gathering of neurologists to share groundbreaking research and to participate in a comprehensive curriculum-based educational program. |
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The Charcot-Marie-Tooth Association staffed a booth at the first Neurology EXPO, sponsored by the American Academy of Neurology on Saturday, October 22, 2005 from 10:00 a.m. to 4:00 p.m. at Atlanta’s Georgia World Congress Center.
We were pleased to join the American Academy of Neurology at this event, which drew attention to neurological disorders and demonstrated how people can live fuller lives through proper treatment and care.
This was the first year for the Neurology Expo, and it probably did not draw as many participants as the American Academy of Neurology might have hoped. However, the CMTA booth was visited by twelve patients and their families, and numerous other attendees expressed interest and took the brochures, newsletters and other literature we provided to spread awareness of CMT.
While the numbers may seem small, being at the EXPO gave the CMTA staff the unparalleled advantage of speaking face-to-face with concerned parents, grandparents and teenaged patients. We discussed approaches to dealing with pain, conservative management, and exercise, and virtually everyone had questions about bracing, including one couple who had traveled from Australia to inquire about alternatives in bracing which are unknown in their home country.
In the afternoon, we briefly attended a presentation by Susan Wheeler, Executive Director of the Hereditary Neuropathy Foundation, but it was our interaction with people with CMT that made the EXPO a successful and rewarding experience. We hope many more of you will join us at future events. |
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CMTA Board President, Patrick Torchia, hosted this annual event to raise money for the work of the CMTA. |
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CMTA Board member, Robert Kleinman, organized and hosted this annual event to raise money for CMT research. |
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CMTA Board member Steve O’Donnell has swum the Chesapeake Bay Challenge each of the past three years. This year, Steve and his children, Jaime and Sean, competed in a one-mile swim on the Chesapeake and raised $46,983 for CMT research.
You can read more about the efforts of Steve’s family and other volunteers in the July-August 2005 CMTA Report. |
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Seventy-five leading CMT researchers presented their latest research findings and worked on collaborations for future CMT research. This was the the second Consortium in North America hosted by the CMTA.
The Consortium was not open to the general public, but you can click here to read selected abstracts of the research presented. |
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The CMTA staffed a booth at the convention to answer doctors’ questions about CMT and to provide printed material for doctors’ offices. In addition, the CMTA hosted a meeting of its Medical Advisory Board to discuss the research grants, the revision of the physician’s handbook and the upcoming Consortium. |
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On February 22, 2005, current Board member, J. Rodman Steele, hosted a dinner at The Breakers in Palm Beach, Florida, to raise money for the CMTA’s research fund.
Before dinner, over one hundred people attended presentations by Dr. Michael Shy, Wayne State University, and Dr. Stephen Scherer, University of Pennsylvania, who explained from a scientific point of view, why ascorbic acid is currently the most promising area of research for CMT Type IA patients.
Equally compelling was the presentation by sixteen-year-old Archit Kanuja, who put a human and youthful face on the problems of CMT and emotionally touched the whole audience when she described what it would mean to her if a cure were found for CMT.
Diseases like CMT that are out of the public mainstream and do not provide income for drug companies have difficulty getting funding for treatments and research, and the money raised at this event will significantly contribute toward the $30,000 committed by the CMTA to help fund the first clinical trials of ascorbic acid in North America.
We still have a long way to go, however. The clinical trials, which will involve over 500 patients over four years, will cost an estimated $5,000,000. |
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GCC's Rock 'n Run for CMT Research
