A Nevus Outreach Founder Reminisces - 10 Years Later
On the occasion of our 10th Anniversary, we asked the founding families to reminisce about how Nevus Outreach was started so many years ago, and we received this wonderful note from Kathy Stewart, mother to Megan Rose who is now 11 years old with a bathing trunk nevus and symptomatic NCM:
"I can’t believe 10 years have passed since the founding of Nevus Outreach! I will never forget the day when Tina Williams and I spoke on the phone; it was so great to talk to another mom who knew exactly what my life was like at that moment. We talked about our fears and concerns, and our desire that our children meet other kids with giant nevi, just so that they wouldn’t feel so alone with their skin. We both kept talking about possibilities, about how this could happen. The dreams got bigger; maybe we could have a conference of sorts, and even bring down a doctor or two who would talk to the parents.
"That phone conversation in October of 1996 was the germination of an idea that eventually became Nevus Outreach, Inc.
"I had previously been in contact with Kelly Powers, whose precious little girl, Molly, had succumbed to complications of NCM earlier in the year. Kelly was excited about the prospect of an organization that could be a resource for parents and individuals affected by GCN and NCM; she said she dearly wished it had been there for her family, and wanted to be involved from the beginning as a way to honor her daughter."
These three families: the Williams, the Powers, and the Beckwith/Stewarts formed an organization which in ten years has accomplished amazing things. Some highlights include:
- Mailing of NOI literature to 11,000+ dermatologists (entirely volunteer effort)
- Establishing the largest scientific registry used by top researchers
- Awarding over $300,000 to scientific researchers at prestigious institutions seeking answers and a cure for Giant Congenital Nevi (Yale University, Memorial Sloan-Kettering Cancer Center, University of Geneva)
- Publishing four medical journal articles using Nevus Registry data
- Distributing over 67,000 color brochures to families and health care professionals
- Maintaining a 24/7 Nevus “lifeline” used mainly by new parents and other family members
- Holding 5 biennial International conferences around the United States, each bigger than the one before, with over 200 attending Conference 2006
"None of this could have been accomplished by any single individual. It took all of us, working together, to make this happen. Some of you have provided your organizational skills, others your talent with needle and thread, others your time that you somehow found, others your financial support. It took ALL of us. And look what we have done!
"And now we start our second decade. Could this be the decade of the cure? Possibly! Nevus Outreach is funding incredibly promising research, research that will at the least provide necessary building blocks to unlocking the mysteries of the proliferation of melanocytes, and may in and of itself actually provide a non-invasive method of treating a nevus. Of simply making it go away. There is so much to do, so much to learn, and it is all amazing and exciting.
"In a very odd sort of way, Megan’s nevus has turned out to be an incredible blessing for Mark and me. We have gotten to be involved with something really good in our lives, something that will hopefully outlive us. I am so thankful for all of the people who have gotten actively involved with NOI. Megan has grown up knowing other kids who share her skin, parents meet other parents and bounce ideas back and forth, adults with GCN meet and socialize (and even take trips together!). NOI has become bigger and better than anything I could ever have dreamed of."
Let us continue to dream. And dream BIG!
