This has been an extraordinary week for CARRIER. This photo shows some of nearly 700 copies of my book about to be dispatched to Genetic Counseling programs worldwide from the Boston offices of Edimer Pharmaceuticals. Edimer is the small, brilliant company working to deliver an uncomplicated treatment that could prevent the EDA gene mutation from causing serious symptoms in the next generation of XLHED families such as my own. Edimer is seeking participants for human drug trials, and together with their team, I’m hoping that the CARRIER will boost awareness of XLHED among genetic counselors, who can connect families with Edimer’s promising research.
I had the opportunity to include a special note with each copy of the book arriving at universities this week. I hope it will help to share it here, too:
When I wrote Carrier: Untangling the Danger in My DNA, I hoped to hearten, and perhaps even unburden, other families struggling with genetic decision-making. I also hoped to honor those in my own family who have lived with genetic disease—in our case, X-linked hypohidrotic ectodermal dysplasia (XLHED)—by telling their courageous, sometimes devastating stories.
But I didn’t dare hope that Carrier could actually help improve the quality of life for future generations of XLHED families. Then, a few months after Carrier’s release, the extraordinary people at Edimer shared with me the promising story of EDI200, an uncomplicated, non-invasive treatment that may allow affected XLHED babies to develop normally. As the mother of two daughters who may be carriers themselves, I feel fervently hopeful: Perhaps my children and grandchildren will have an easy solution instead of the near-impossible decisions I faced. I’m deeply honored to know that by raising awareness of XLHED, Carrier may help researchers in their drug-approval process as they seek families for their trials.
Because of this, I see now that Carrier is perhaps most of all a story for my daughters and the generations to follow. This book is for you, too, and the families you will meet. I hope you will share my story freely, and never hesitate to contact me if there’s more I can do.
I very much hope to visit many of the programs CARRIER will reach. Thank you for stopping by www.bonniejrough.com, and especially for keeping in touch. I always appreciate hearing from you!