ALS Ice Bucket Challenge Progress
March 10, 2015 - From the Desk of Jerry Dawson, President and CEO of The ALS Association Jim "Catfish" Hunter Chapter
Dear Fellow ALS Warriors,
The ALS Ice Bucket Challenge made 2014 a year to remember, providing help and hope to so many people. Our Chapter received $259,000 and we are so grateful for your generosity! Our Board of Directors approved several investments and I am excited to share them with you below.
Direct Support to Families
ALS is an expensive disease and many necessities are not covered by insurance. For more than a decade, The Jim “Catfish” Hunter Chapter has provided a grant to help offset some of these costs. Thanks to the ALS Ice Bucket Challenge, the grant will be increased from $2,500 annually per family to $3,000. In 2014 alone, 530 applications were approved and our Chapter provided $237,205 in aid through this program. Examples of approved usage include respite care, building ramps, making bathroom modifications, widening doorways and purchasing assistive technology devices to help people communicate and live more independently.
Multidisciplinary Care
Attending a multidisciplinary ALS clinic has been shown to improve quality of life and lifespan by an additional 8-10 months. $16,600 was given to the new ALS clinic at the University of North Carolina to assist with staffing needs. The UNC ALS Clinic is now the 5th multidisciplinary clinic in North Carolina funded by our Chapter. Our other clinics are located in Charlotte, Durham, Greenville and Winston-Salem.
Expanded Care through Technology
Traveling to a multidisciplinary ALS clinic becomes increasingly more difficult as the disease progresses and people who live in remote areas are less likely to attend an ALS clinic at all. In an effort to expand expert care to this currently underserved population, our Board has committed $30,000 to fund a one year pilot telemedicine program in partnership with the Duke ALS Clinic*. The funding will allow Dr. Bedlack to replicate the existing ALS telemedicine program that he operates through the Durham VA. He will connect directly from his office to 3-5 patients per week, using web-cams and a secure internet connection to continue to provide state of the art ALS monitoring and treatments. The hope is that after successful completion of the pilot, similar telemedicine clinics can be offered through other ALS clinics in North Carolina.
*Pending written approval from Duke University Medical Center
New Challenge
There is no question. Ice Bucket donations are having a real and significant impact on the lives of people battling ALS right now. We have more resources than ever to attack the disease from all fronts and that is just what we are doing.
The ALS Association has been entrusted with a huge responsibility and we are working hard to prove to the world that we are using their donations to have the greatest impact possible. Now is not the time to lose momentum. We need you to stay informed and stay involved, which is why I am challenging you to help us turn this moment into a MOVEMENT!
Our Walk to Defeat ALS® provides the funding necessary to sustain our research, care services and advocacy. We will not be able to continue gaining ground on ALS without successful walks.
As we enter our 2015 Walk season, I challenge you to sign up for a Walk near you so that we can continue to fund the fight against ALS at a high level. We cannot do this without you. www.CatfishChapter.org
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Thank you so much for all that you have done and continue to do. Our Chapter is so incredibly grateful for your support this past summer, and for the past 27 years. I look forward to seeing you at your local 2015 Walk to Defeat ALS!
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Together in Challenging ALS, Dave Shore |
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