Million Dollar Bike Ride-Lesch Nyhan Syndrome Fund
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Fundraising goal $10,000.00
Recent donations (7 donations)
Name DescendingX Amount
Georgie's Crew $8350.00
Carrie $20.00
Laura&libby $10.00
Linda Spratt
Best for Baby Osteopathy $300.00
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Recent donations
Event participants
Rachel Elo
Joanne Lynne
Sarah Prebianca
Riding For Georgie - Lesch Nyhan Syndrome

Our Girl!
The Ride for LNS
We are riding for our sweet Georgia girl and we are riding for all families impacted by Lesch Nyhan Disease (LND), with hopes of raising funds to advance LND research as quickly as possible. Georgia suffers from the everyday pain of spasticity, dystonia and GI issues. Additionally, her vocal cords are affected by her severe motor disorder. She is 2.5 and cannot roll, sit, stand or walk. She cannot speak. She is on multiple medications to manage her kidneys as they overproduce uric acid, leading to kidney stones, gout and potential kidney failure. She is involved in physical, occupational, and speech therapies and is on multiple alternative treatments. We have tried so many medications to assist with pain and increase her quality of life but no treatment options thus far have offered long-term or profound solutions for his neurological deficits. My family, and the entire LND community, has been given this amazing opportunity to ride the Million Dollar Bike Ride to raise funds for LND researchers to find treatments and cures for our rare disease heroes.
The Need
Rare diseases are often dubbed "orphan diseases" because drug companies have deemed them unprofitable and therefore lack interest in developing treatments them. This leaves rare disease families with limited options. But this is our chance to raise money that will directly impact research and treatments for LND, allowing us to enroll in clinical trials that could change our lives.
The Opportunity
This is the opportunity that my husband, Connor, and I have been waiting for. With your support for our ride, we can finally make a mark on research and potentially give our sweet daughter a better quality of life. Your generosity will increase our chances of help to establish a first of its kind clinical trial for LND. A clinical trial like this has the potential to directly, and greatly, impact Georgia's life, my life, and the lives of all families impacted by this debilitating disease. Thank you for joining in our efforts.
Donation messages
Hoping this brings a cure for your sweet girl! --Carrie
Such an amazing thing to do! Xx --Laura&libby
Love you guys! --Kim Doucette
Love you guys! --Ms. Rachel Elo
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lagarry@upenn.edu | Leigh Anne Garry, Director of Business Process Integration and Technology Training | 215.746.8840
2929 Walnut Street, Suite 300 Philadelphia, PA 19104 | Superuser