I must admit, I have been struggling with writing this story! I mean truly where did this journey begin? On the date my mom was officially diagnosed with Huntington’s Disease, or do we start when symptoms first began? Or do we go way back and look at some of my grandfather’s nuances and behaviors? And this my friends is truly the crux of HD! It is truly a family disease! It slowly sneaks in and all you know is your loved one, is acting a little different!
Huntington’s disease is a thief. It stills the mind and the bodies of those affected. It stills the security, familiarity and comfort of families! It stills the safety of home.
And yet, with the thief that it is, our HD community continues to push through and hold onto hope! It is an amazing community that though I hate the thief, I love the family I have gained! This community is strong, which strengthens me! They are resilient, which helps me to push forward! And finally they are truly a family that shares in each other’s ups and downs of this HD life journey!
So, yes, I coordinate and participate in our annual Team Hope Walk for my mom, my brother, my aunt, my family. But I also do it for it our larger Huntington’s Disease family! For without them, I would not be where I am today (I would have surely crumbled) or doing some of the things I now do! But with them, I can hold onto HOPE and breathe a little easier knowing there is always an ear to listen.
For this and many more reasons, I truly thank you for visiting our team fundraising page! With your help, we can help HDSA achieve their mission to improve the lives of everyone with Huntington’s disease and their loved ones.
Now, a little intro to HD and the HDSA!
Huntington’s disease (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 during their prime working years and has no cure.
HD is known as the quintessential family disease because every child of a parent with HD has a 50/50 chance of carrying the faulty gene. Today, there are 30,000 symptomatic Americans and more than 200,000 at-risk of inheriting the disease.
The Huntington’s Disease Society of America (HDSA) 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.
Across the United States, HDSA currently supports:
• 54 volunteer led Chapters & Affiliates
• 41 Centers of Excellence (one right in our back yard at the University Of Washington)
• 65 Social Workers
• 160 Support Groups
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.
Please walk with me by joining my team and help make a difference! If you cannot walk with us, please consider making a donation to our team fundraising page by clicking the ‘Donate’ button at the top of this page.
Thank you for your support!