Million Dollar Bike Ride-STXBP1 Encephalopathy Fund
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Fundraising goal $2,000.00
Recent donations (16 donations)
Name DescendingX Amount
Mrs. Laura Shetka $100.00
Apricity Foundation $1000.00
Mrs. Katie Corts
Hadley and Poppy Noonan $250.00
Elizabeth Addison
Recent donations
Top donors (16 donations)
Apricity Foundation $1000.00
Tricia & Jerry Haley $250.00
Michael and Theresa $250.00
Kenny Aiello $250.00
Steve & Jessica's Fundraiser for Lulu's Crew

STXBP1 encephalopathy.
My friends daughter Lucy was born in May 2018, and shortly after was diagnosed with a rather severe neurological disease called STXBP1 encephalopathy. This is a rare, genetic, neuro-developmental disease that results in severe intellectual disability and an unpredictable combination of seizures, motor and behavioral impairments. Needless to say, it's a life-changer for the kids and families affected - check out the family foundation to learn more There are no cures, but we're working to change that.
A chance to make a difference.
Since the disease was only described in 2008, there has been minimal research into developing new cures. Ben has started working on the disease in his lab at Penn and with collaborators at the Children's Hospital of Philadelphia (CHOP), where Lucy and other kids with STXBP1 are treated. He and Lucy's genetic counselor have also begun to motivate work in parallel at top neurodevelopment labs throughout the U.S. and Europe, in partnership with the STXBP1 Foundation. There are several therapeutic strategies that could work, but these require time and money to test!
Biking for Lulu.
To raise money for research, I will bike 34 miles during the Million Dollar Bike Ride on June 11th. When you donate to this cause, you will know exactly where your money is going - to the top labs around the world working directly on developing a cure for Lucy's condition. Every dollar goes directly to research, and Ben will work with the Orphan Disease Center to help make sure the money ends up in the hands of expert scientists and clinicians who have the best chance at developing a cure to help kids NOW, in Lucy's generation. They have already made real progress towards developing a new therapy and you can help us and others in our fight to cure this disease.
Fun facts (or serious ones)
  • It's estimated that between 1 in 30,000 kids have STXBP1 encephalopathy
  • The STXBP1 foundation is right here in Philly!
  • More than 25 children with STXBP1 are treated at CHOP
  • Team members will bike 13, 34, or 72 miles
  • 100% of your donation is tax-deductible and goes right to STXBP1 research
  • Total team goal is $150,000
  • If we raise 30K, Penn will match it!
Donation messages
Olivia, Owen, Hadley, Poppy and ATX friends are donating 100% of lemonade stand proceeds - $640! They love Lucy!! --Olivia, Owen, Hadley, Poppy and ATX Friends
Good luck Lulu's crew! --Elizabeth Addison
Amazing work that benefits amazing children. Go, Lulu's Crew! --Brigitte & Ken
Good luck to Lulu's Crew! --Michael and Theresa
God Bless Lulu's Crew --Tricia & Jerry Haley

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Post fundraising progress | Anne Marie Del Rossi, Director, Data Services | 215.898.3062
2929 Walnut Street, Suite 300 Philadelphia, PA 19104 | Superuser