Dear Abbey,
I am so excited to get your book. I am living the life with my daughter that, were it not for the Orphan Drug Act, she would not be celebrating her 30th Birthday next week!!! I have tried very hard to explain to my little Cystinosis community that the treatment that most of our kids are on……. is actually #41 on the list of the first 100 orphan drugs approved (thank you Frank Sasinowski) as a direct result of the Orphan Drug Act! We as a community are blessed and I know it! So thank you Abbey for all you have done for the rare disease community! I know what you often say……….that “you are just a grandmother from Connecticut”, but I know you are much more than that!!! From the bottom of my heart…………thank you!
Marybeth Krummenacker