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I recently added a few pages to my daughter's scrapbook using paper designed with lemons. The phrase "turning lemons into lemonade" fits her perfectly. Elana has NF1. She was diagnosed when she was five, and the diagnosis has had a profound effect on both her life and mine.
I have been active in the NF Network, formerly Nf, Inc., on a local level and a national level for over 10 years. A representative from the organization greeted me at our first visit to an NF clinic, and provided resources to help me educate myself about the condition. Once I became involved, I was introduced to a network of parents, like myself, who were searching for answers, advocating for their children, and seeking support. Many of those parents have become dear friends over the years, my "lemonade."
It was through that organization that I first learned about the NFRP. I joined a group of NF, Inc. individuals who visit Capitol Hill every year to advocate for research funding for NF. I distinctly remember getting a crash course on the Department of Defense's Congressionally Directed Medical Research Programs and being so impressed by their implementation. The following year, I served as a consumer reviewer of the grant proposals submitted for NF research and have continued to do so since that time. The experience has been invaluable to me - not only is the process informative about the happenings in the medical research arena, but it is rewarding to know that my opinion is valued.
In 2009, Elana's NF specialist discovered a brain tumor during a routine MRI. I immediately connected with my NF contacts and was led to the "right" specialists for our family. Her surgery was a success! Although it was traumatic for Elana in many respects, she managed to turn it into something positive. She began to make personalized care packages for other children affected by NF. Here's how Elana describes the project in her own words:
"I knew what it was like to feel alone, and it felt awful! So I put a notice on the NF Network website and received emails from parents explaining their child's troubles. Then I would respond by asking what the child liked to do, and would use that information to pick out things for the package. I would also include a letter from myself explaining that I, too, had NF, and that they were not alone. I ended up sending roughly 100 packages across the country."
Last summer, Elana connected again with kids who have NF by attending Camp New Friends in Virginia. She loved it! Elana describes her camp experience this way: "I met nearly 65 other people with NF. I found what I had always wanted - people like me. Although our symptoms were unique, we were all the same. I understood exactly what the campers were feeling when they talked about their MRIs and medical tests, and they understood me. It felt great!"
Our connection to the NFRP came full circle this year when Elana came with me to advocate for continued funding of NF research. We were able to hear about the great strides that scientists are making in the field of NF research, and even clinical trials, and how the NFRP is keeping up the momentum. Elana used her voice to tell her story in the hopes that these programs will continue.
Elana's diagnosis has opened our eyes to other families affected by NF, to a dedicated scientific community that is committed to working toward finding a cure, and to connections with young people who remind Elana that she is not alone in this fight. As I said, Elana has truly transformed lemons into lemonade!
Last updated Wednesday, January 27, 2016