Million Dollar Bike Ride-STXBP1 Encephalopathy Fund
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Fundraising goal $7,500.00
Recent donations (22 donations)
Name DescendingX Amount
Roberto $200.00
Belgium and Dutch STXBP1 MDBR Teams $10624.69
Jess Caldwell $50.00
On behalf of Becky! $2500.00
M Neinast $40.00
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Recent donations
Top donors (22 donations)
On behalf of Becky! This amount includes donations indented below $13124.69
   Belgium and Dutch STXBP1 MDBR Teams    $10624.69
Belgium and Dutch STXBP1 MDBR Teams $10624.69
Anonymous
Kevin Foskett and Hilary Martin $350.00
Baur family $250.00
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Ben's page for Lulu's Crew (Team STXBP1)

STXBP1 encephalopathy.
Our daughter Lucy (aka Lulu, LuluBelle, Goose) 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 www.stxbp1disorders.org
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. I have started working on the disease in my lab at Penn and with collaborators at the Children's Hospital of Philadelphia (CHOP), where Lucy and other kids with STXBP1 are treated. Working with Lucy's neurogenetics team at CHOP, we 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 72 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 I 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
  • Team members will bike 13, 34, or 72 miles
  • More than 30 children with STXBP1 are treated at CHOP
  • www.stxbp1disorders.org
  • If we raise 30K, Penn will match it!
  • 100% of your donation is tax-deductible and goes right to research
  • Total team goal is $150,000
Donation messages
We are very proud to contribute this great initiative with our Belgium and Dutch MDBR teams of STXBP1 researchers, clinicians and patient families! See: https://gofund.me/2789f859 for our version of the MDBR. --Belgium and Dutch STXBP1 MDBR Teams
Fantastic work Lulu's crew, you are all incredibly inspiring. Congratulations for making a difference. --Jess Caldwell
Cheering for TEAM LULU --Dr. Deb French
Good luck tomorrow! --Sue Kron
Go Lulu's Crew! --Katie Helbig
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delrossi@upenn.edu | Anne Marie Del Rossi, Director, Data Services | 215.898.3062
2929 Walnut Street, Suite 300 Philadelphia, PA 19104 | Superuser