Monday, October 21, 2013

Harleysville family hosts haunted house to combat daughter's rare disease

Scare for a Cure!!!
Saturday October 26, 2013
Starting atp.m.

Click to read The Reporter's story about Miea.

Join us on Saturday October 26, 2013 at 4 p.m.
726 Sumneytown Pike Harleysville PA 19438.

$20 donation per person (kids under 15 FREE) includes food, drinks, games, prizes, and fun for all ages including a kid friendly haunted house and a 15 and over haunted house starting after dark!

The Scare for a Cure fundraiser is inspired by 20 month-old Miea who suffers from Sturge Weber Syndrome. With the help of our community last year Miea was able to get treatment from the Kennedy Krieger Institute.  As a result of Miea’s time there researchers were able to determine the cause of SWS.  This information is HUGE! Researchers will be able to offer new treatments and have hope for a cure. All the funds raised through this event will go towards research at Kennedy Krieger Institute and help kids who suffer from SWS. 

Here is a letter from Miea's doctor who is leading SWS research:
Dear Families and Friends,

I hope this email finds you well. As you know, we recently revealed the cause of Sturge-Weber Syndrome (SWS): a genetic mutation that occurs before birth. These findings are truly a turning point for research on SWS because we can now move quickly toward targeted therapies, offering the promise of new treatments. Now, more than ever, we need to continue our fundraising efforts because the hope for a cure has never been closer.

We are making good progress in the lab towards setting a cell culture model for SWS-we expect to soon be testing the effects of novel treatments.  Discussions are underway as to how best to begin setting up pilot treatment trials based on our new knowledge of the basis of SWS.

I’d like to take a moment and share with you how another of our many supporters is helping to raise funds for our center and awareness of SWS. Please consider joining the family, friends and neighbors of Carla and Patrick Brown who will be hosting Scare for a Cure  on their 4 acres of farmland in Harleysville PA to benefit the Hunter Nelson Sturge-Weber Center at the Kennedy Krieger Center.  There will be 2 Haunted houses (one for kids and one for older teens and adults), food, drinks and Halloween games, a DJ, fireworks and a bonfire with fun to be had by all!  They still need volunteers to help out so if you can help or want to support this effort please contact Carla at .  Together we can make a difference and discover a better future for all with SWS.
The funds raised by this event will directly support the development of new treatments for SWS. For more information, please check out their Facebook event page at:

As Director of the Hunter Nelson Sturge-Weber Center at Kennedy Krieger, and lead investigator for several ongoing SWS clinical and translational studies here, I would greatly appreciate your support of this initiative.

Thank you for your time,

Dr. Anne Comi

Anne M. Comi MD
Associate Professor
Neurology and Pediatrics
Kennedy Krieger Institute
Johns Hopkins School of Medicine
Director, Hunter Nelson Sturge-Weber Center


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December 23, 2013 at 1:32 AM 

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