When Ryan was a year-and-a-half old, and was medically stable, Ruth and Keith Geismar started planning the very first fundraising event to benefit the NFED. Ruth wanted to give back to this organization that had embraced her family and Ryan. Now, we are close to wrapping up the NFED’s 15th annual Halloween Bash.
We would like to say how thankful we are to the Geismars, the Committee Members and everyone involved. This year we raised approximately $100,000. Over the past 15 years we have been blessed by the outpouring of generosity with the raising of 3.8 million dollars.
The money raised by this fundraiser allows the NFED to host medical conferences, provide patient support, and fund research. This research has led to the identification of specific genes responsible for a various forms of ectodermal dysplasia.
The NFED is proud to report some significant strides in research:
- Ten babies have now been treated with EDI200, a replacement protein for EDA, a protein important in the development of hair, teeth, and exocrine glands (e.g., sweat and salivary glands). We now await the results from this clinical trial which tested the effectiveness of a replacement protein, EDI200, in newborn boys affected by x-linked hypohidrotic ectodermal dysplasia with the mutation.
- Maranke Koster, a researcher at the University of Colorado, continues her work with p63 conditions and is making significant advancements in her research for ankyloblepharon-ectodermal dysplasia-clefting (AEC) syndrome (the syndrome that affects Ryan Geismar and many others). Dr. Koster is working to grow healthy skin from stem cells to help the severe skin erosion characteristic of AEC (?). Her research lab has learned that these skin erosions also affect individuals affected by another form of ectodermal dysplasia that is caused by the p63 gene called ectrodactyly-ectodermal dysplasia-clefting (EEC) syndrome. Her work is the first step towards developing treatments for babies suffering from skin erosion. This progress for AEC has come in the last 15 years as a direct result from the Halloween Bash – and you!
The Halloween Bash has also helped fund our Treatment Assistance Program, which provides financial assistance for families unable to afford dental treatment, wigs, or air conditioners. Now, everyone with ectodermal dysplasias can smile brightly.
We especially thank our amazing committee who has helped us each year. Their efforts are paying off as we watch the research make great strides toward increased understanding and improved treatments.
We are so grateful to all our supporters, our silent auction donors and our friends and family for their continued support. Thank you for believing in our cause to give back and to make life better for all NFED families.
And foremost, we thank Ruth and Keith Geismar and Alice and Bruce Geismar for their dedication, leadership and generosity. They have been the driving force behind the Bash and we credit them for its success.
Let’s continue to create smiles together!