Hello, EB friends -
 
One of our EB clinics has asked me to share this information with the EB
community, and I'm glad to do so.  If you can, please post this email on EBZone
and EBFriends, where I am not a participating member, so that those EB families
can also learn about this opportunity, and please share with anyone who may not
be on a forum that might be interested.
 
Please find attached a letter TO YOU from Chicago Children's Memorial Hospital,
which describes a new research study to be initiated to determine the benefits
of Alwyn (Alwextin) cream. 
 
It has received "orphan designation" by the FDA but has not yet received a
"marketing exclusivity date":
 http://www.fda.gov/Orphan/designat/alldes.rtf.  Here is a description of the
research study on the NIH database: 
http://clinicaltrials.gov/ct2/show/NCT00825565. 
 
Twenty patients are needed, the age must be 6 months or older, preferably RDEB
and at least 25% affected.  Please read the attached letter for more information
and/or contact the

clinical research fellow working on this study, Dr. Reena Vaid.  Reena invites
your questions, comments and expressions of interest in participating in the
study. 
 
No money has been budgeted in this trial for the travel costs of EB patients,
unfortunately, but please remember how important these trials are toward the
development of approved, effective, insurance-covered EB treatment options. 
There are so few!!!  It may be very much worth your while to find a way to
participate.  If you need ideas on how to raise money in order to participate,
let's all share that information here in the forum.
 
Please feel free to call or email Reena, here is her contact information:
Email:  rvaid@...
Phone:  773-327-3326

All the best,
Gena Brumitt Gruschovnik
 





Vice Treasurer, Executive Committee, DEBRA International -
www.debra-international.org
Director of Awareness & Education, DEBRA Canada - www.debracanada.org
Founder, Walk a Mile in My Shoes campaign for National EB Awareness Week -
www.ebrelay.org
Acting President, Nokee Kwe Occupational Skill Development Inc. -
www.nokeekwe.ca

Co-Chair, Democrats Abroad Canada, London Chapter -
www.democratsabroad.org/group/canada
We must be the change we wish to see in the world.  ~ Mahatma Gandhi

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