Established in May 2012, the mission of Hearts for ALS NY is to act as a resource for patients and caregivers, and increase awareness & understanding of ALS through volunteer services around Monroe County and the surrounding area to improve the quality of life for our pALS.
Amyotrophic lateral sclerosis (ALS), often referred to as “Lou Gehrig’s Disease,” is a progressive neurodegenerative disease that affects nerve cells in the brain and the spinal cord. While there is not a cure or treatment today that halts or reverses ALS, there is one FDA approved drug, riluzole, that modestly slows the progression of ALS as well as several other drugs in clinical trials that hold promise.
“Never doubt that a small group of thoughtful, committed citizens can change the world; indeed, it’s the only thing that ever has.” Margaret Mead
In certain cases, specific devices and therapies can be used to manage the symptoms of the disease. This can help those diagnosed to maintain a higher quality of life and prolong survival. ALS is a disease that can be experienced differently case by case, so it is important to gain information and experiences unique for each individual in order to provide the best care. In fact, there are medically documented cases of people in whom ALS ‘burns out,’ stops progressing or progresses at a very slow rate.
Hearts for ALS NY is a fully volunteer based non-profit organization and nearly every member of our Board and Board of Directors has been personally touched by ALS. We care deeply about this cause and about those affected by this terrible disease.
Through the help of our volunteers, supporters and donations, we are able to provide equipment, care and monetary support for those currently fighting ALS and those that care for them. In addition, we aim to serve as a support system and network ensuring that nobody is alone in their fight.
We are always available to help Patients (pALS), family members and Caregivers (cALS) by providing support and resources when needed and available. If you are currently caring for or have been diagnosed with ALS, we would like to hear from you. Please click here to contact us today and provide us with some details about your situation and we will get in touch with you as soon as possible with information on how we can help.
Would you like to help our efforts, donate to the cause, or partner with us for an event/benefit? Please visit our donations page for more details. Also, if you are an organization with a similar mission to Hearts for ALS NY, please contact us on our Partnerships page and you can help us grow our support network!
Some of this information courtesy of the ALSA.org website.
Information and answers for those diagnosed with ALS, and those assisting someone with ALS.