By Matthew Santamaria (email@example.com)
California resident Max Moon does not have Huntington’s disease (HD) in his family but was motivated to do more with the Huntington’s Disease Society of America’s (HDSA) Northern California Chapter
HD is a fatal genetic disorder that causes the progressive breakdown of nerve cells in the brain. It deteriorates a person’s physical and mental abilities usually during their prime working years and has no cure.
“I had a client/friend get me into HDSA since they needed participants for charity fundraising events,” said Max. “After a couple years, I realized the money I give each year does not even come close to the difference I can make by putting my energy into HDSA as a Chapter member and sharing its mission in our community to help raise awareness and more funds on a broader scale.”
Since 2013, he is the Volunteer Director of Advocacy for HDSA’s Northern California Chapter. Max and his committee have been meeting with Congress and Senate representatives to help pass the HD Parity Act.
Without passage of the HD Parity Act, patients with HD will continue to suffer the mandated 2-year waiting period for Medicare benefits after qualifying for Social Security Disability Insurance. During those two years, patients continue to decline, and are falling through our social safety net by being denied access to Medicare when they need it most. By passing the HD Parity Act, it would take away the 2-year waiting period.
Max also assists with several events with the Chapter including the annual Golf Tournament.
“I am on several other committees with our board members,” said Max. “I am also the Emcee of our Chapter events and coordinate fundraising, sponsorships and donations throughout the community.”
Throughout the years, Max has been moved by the determination of the HD Community to find a cure as the Community is a Family.
“The people I have met in the HD community are all beautiful and unique people,” he explains. “I have met so many truly genuine people that are all either in the fight or fighting for the same cause.”
HD is described as having ALS, Parkinson’s and Alzheimer’s diseases – simultaneously. Symptoms include personality changes, mood swings, depression, forgetfulness, impaired judgement, unsteady gait, involuntary movements, slurred speech, difficulty in swallowing, and significant weight loss.
“Just because their number was picked in the lottery of life to get this unfortunate disease does not mean we can’t all do our best to help,” said Max. “To witness how this effects people is gut wrenching. The way it starts off slow and progresses is sad to witness because it slowly chips away at a person’s functions effecting a personality and eventually every aspect of life. To witness a large issue like this potentially be resolved would be witnessing a dream come true for so many.”
Max continues to try and make a difference in the HD Community.
“It makes me feel good helping people and I use this as an outlet since my mom is disabled and lives out of state,” said Max. “I have an opportunity to make a difference in people’s lives that really need help and affected by a tragic disease that they have no control over.”
Max has a message for the HD Community with an inspirational quote
that resonated with him a long time ago:
"Heal yourself, heal your family, heal your friends, heal the nation, heal the world. If everyone did that, imagine the world we would live in.”
Huntington’s disease is a fatal genetic disorder that causes the progressive breakdown of nerve cells in the brain. It deteriorates a person’s physical and mental abilities usually during their prime working years and has no cure. Every child of a parent with HD has a 50/50 chance of inheriting the faulty gene that causes Huntington’s disease. Today, there are approximately 41,000 symptomatic Americans and 200,000 at-risk of inheriting the disease. In less than 10% of cases, juvenile Huntington’s disease (JHD) affects children & adolescents. JHD usually has a more rapid progression rate than adult onset HD; the earlier the onset, the faster JHD progresses. HD is described as having ALS, Parkinson’s and Alzheimer’s diseases – simultaneously. HD is characterized by a triad of symptoms, including progressive motor dysfunction, behavioral disturbance and cognitive decline.
The Huntington’s Disease Society of America is the premier nonprofit organization dedicated to improving the lives of everyone affected by HD. From community services and education to advocacy and research, HDSA is the world’s leader in providing help for today and hope for tomorrow for people with HD and their families.
To learn more about Huntington’s disease and the work of the Huntington’s Disease Society of America, visit www.HDSA.org or call 1(800)345-HDSA.
This is a story featuring a personal experience with Huntington’s disease. If you would like to have your story told please contact Matthew Santamaria at firstname.lastname@example.org