As many of my followers are aware, my husband was diagnosed and passed duhe to ALS, also known as Lou Gehrig's Disease. We were very blessed to have healthcare from the VA, wo supplied us with medications, supplies, rehabbing our house, everything he needed up until the day he died. The most important part of his care was the knowledge that the newest, latest information, medications, tests and therapy were all available to us, due to the government's funding to expand access and activities towards ALS support and research.
With the new government cutbacks depleting "overly-unnecessary" funding, research and support in agencies such as the National Institutes of Health, families of people diagnosed with ALS, as well as other terrible fatal diseases, will be unable to support new therapies, drug treatments, and medical breakthroughs for these diseases.
I happened on a FB post from the ALS Association asking readers to fill in a form that would be sent to each congress member asking to vote down any funding cuts. All you have to do is fill out your name, city and state and they will send it. Please think about it...
A hoax? I just received a letter from my Senator. Read it below:
February 19, 2025 Mr. Pat Martin Dear Pat: Thank you for contacting me about Amyotrophic Lateral Sclerosis (ALS). I appreciate hearing from you. Every year, ALS patients and their families travel from Illinois to my office in Washington, D.C. These inspiring individuals demonstrate courage and hope. In 2020, I co-founded the bipartisan Senate ALS Caucus to help raise awareness about the difficulties faced by ALS patients and their families and advance policies that improve their quality of life. Last Congress, I cosponsored the ACT for ALS Act (P.L. 117-79), which would have created new pathways for faster and broader access to medical therapies for those most in need, particularly for people diagnosed with ALS. This legislation would have facilitated access to new therapies, drug treatments, and medical breakthroughs for ALS patients. It also would have bolstered an ongoing mechanism to share feedback and information between patients, physicians, federal agencies, and national organizations that facilitate care services to improve quality and access to care. On December 23, 2021, President Biden signed the ACT for ALS Act into law. On March 23, 2024, President Biden signed the Further Consolidated Appropriations Act, 2024 (P.L. 118-47) into law. This legislation raised the budget for the National Institutes of Health (NIH) to $48.6 billion, a $300 million increase from Fiscal Year (FY) 2023. It also included $75 million to expand access and activities authorized by the ACT for ALS Act. The NIH is the foremost biomedical research institution in the world and offers our best hope for treating and curing ALS. This funding represents an important victory for medical research worldwide. I am committed to advocating on behalf of ALS patients and their families. I will keep your thoughts in mind as relevant legislation is considered by the Senate. Thank you again for contacting me. Please feel free to stay in touch. | |
Sincerely, Richard J. Durbin United States Senator | |
