Kennedy is a quick witted and fun loving 7 year old! She enjoys swimming at the lake, cheerleading, and playing with her family and friends. At 6 months of age Kennedy was diagnosed with Collagen VI Myopathy/Ullrich Muscular Dystrophy. Collagen VI is a rare disorder with a wide range of symptoms including, but not limited to proximal muscle weakness, joint contractures, rigid spine, and respiratory insufficiency. Since birth, Kennedy has shown her strength and resiliency through multiple hospitalizations and some major surgeries.
Each year, the tradition has become to host a fundraiser to celebrate another year with our amazing girl. Our main goal is to spread awareness and give back to this small but VERY mighty CMD community. The most impactful way to do this, is by raising funds for research, for those just like Kennedy who have been impacted by this specific diagnosis. We are proud to say that each year, the funds raised have supported several research grants.
Currently, there is no cure for this Collagen VI/Ullrich Muscular Dystrophy. However, researchers are on the cusp of finding and testing new therapies that could work towards slowing down the progression of symptoms.
Here's how you can help:
- Donate: Contribute whatever you can. No amount is too small!
- Spread the Word: Share my fundraising page with your friends, family, and social networks. Let’s spread awareness so we can raise more!
Thank you for standing by me in this effort. Your support means the world to me!