Ask Your Legislators to Join the Congressional Neuroscience CAUCUS
Find out if your congress member is already a member here. If they are not a member, learn how to contact to your legislator by clicking the links below. If they are already a member, send a letter to thank them!
If you’re unable to download the template documents, please copy and paste the text below.
“Letter of Consideration” Template
Dear Representative/Senator [Member’s Last Name],
I am writing to you today as a constituent and advocate for individuals affected by neurological conditions, specifically CADASIL (Cerebral Autosomal Dominant Arteriopathy with Subcortical Infarcts and Leukoencephalopathy). As someone personally impacted by CADASIL, or who knows someone living with this condition, I am reaching out to ask you to join the Congressional Neuroscience Caucus and help raise awareness for this devastating disorder.
CADASIL is a rare genetic neurodegenerative disease caused by a mutation on the Notch 3 gene. It primarily affects the small and medium blood vessels in the brain, leading to migraines, mood disorders, balance issues, strokes, cognitive decline, and dementia. Although it affects an estimated 5 in 100,000 people worldwide, CADASIL remains vastly under-recognized, with limited research funding, no effective treatment options, and no cure. This lack of attention, compared to more well-known neurodegenerative diseases such as ALS, MS, Alzheimer's, and Parkinson’s, significantly impacts the lives of those living with CADASIL and their families.
Unfortunately, CADASIL is often misdiagnosed as one of these diseases due to its similarity in symptoms. This leads to patients being misdiagnosed or not diagnosed at all, preventing them from receiving the proper care and treatment they desperately need. With an estimated 1 in 300 people carrying some type of Notch 3 mutation, it is urgent to support Notch 3 research in all forms.
By joining the Congressional Neuroscience Caucus, you can play a crucial role in advocating for increased research funding, raising awareness of the unique challenges faced by individuals with conditions like CADASIL, and supporting policies that can drive advancements in diagnostics and treatment. Representation in Congress is vital for improving access to healthcare, fostering scientific innovation, and supporting funding that could one day lead to life-changing treatments for CADASIL and similar conditions.
Your involvement in this caucus would send a powerful message to the neurological and rare disease communities that we are not forgotten. It would also provide a platform to highlight the need for greater research, awareness, and policy support for neurological diseases that affect millions of Americans, including those with CADASIL.
I urge you to consider the positive impact your participation in the Congressional Neuroscience Caucus could have on communities like ours. If you would like to learn more about CADASIL or discuss this matter further, I would be happy to connect with you at your convenience.
Thank you for your time, consideration, and service to our country.
Sincerely,
[Your Name]
[Your Title or Affiliation, if applicable]
[Your Contact Information]
“Letter of Thanks” Template
Dear [Legislator's Name],
I would like to sincerely thank you for your involvement in the Congressional Neuroscience Caucus. Your support and commitment to raising awareness for neurological diseases and advocating for policies that benefit patients and their families is deeply appreciated.
Additionally, I want to thank you for teaming with the American Brain Coalition to advance research in the field of neuroscience. Your leadership is making a significant impact, particularly for individuals and families affected by conditions like CADASIL (Cerebral Autosomal Dominant Arteriopathy with Subcortical Infarcts and Leukoencephalopathy). CADASIL is a rare genetic neurodegenerative disorder that shares many symptoms with other well-known neurodegenerative diseases, such as MS, ALS, Alzheimer's, and Parkinson's. As a result, it is often either misdiagnosed or goes undiagnosed altogether, leaving patients without the proper care and treatment they need.
Your support for advancing neuroscience research is helping to bring much-needed attention to conditions like CADASIL, ensuring that families affected by these diseases can have access to more accurate diagnoses, better treatments, and greater hope for the future.
Thank you for being a vital part of this important initiative. I look forward to seeing the continued progress and impact of your efforts.
Warm regards,
[Your Name]
[Your Contact Information]