First Friday Update - June 5, 2009
I hope this note finds you well and looking forward to a nice weekend. The weather down here is lovely.
Today a bunch of us from all over the country meet at the conference hotel in Texas to continue planning the Nevus Outreach 2010 Conference. We will work through the weekend and get home Sunday. Look for more information about that after we get back.
Big news on the funding front - we have secured part of the funding of our Tissue Bank project, and also part of the Genomic Analysis project. Slowly but surely we get the pieces of the puzzle fitting together. Once we get nevus tissue moving, the first order of business is to look for clues in the genes about the origins/causes of congenital nevi. This would likely shed light on potential therapies and answer other questions. Our huge thanks to the Morgan Family Foundation!
Speaking of the 2010 Nevus Outreach Conference, donors are contributing toward offsetting some costs of our next conference. If you wonder how we are able to keep the cost affordable, offer incredible sessions and help out people who can't afford the trip but who really need to be there, please remember the farsight and generosity of donors who support our conferences.
More big news on the research front - in 1997, as a little boy was dying from NCM complications, his dad made a promise to him: He would one day ride his bicycle across the USA to raise money to cure NCM. The day has come, and Brian Stockbridge of Shelton Connecticut will ride 3500 miles in 30 days, securing pledges and donations in memory of his son David. Brian and I are asking everyone we know to consider pledging at least one cent per mile to Brian's passion: Nevus Outreach. To learn about Brian's ride, check out these links:
ridebrianride.com
Brian's story on our web site
Well, it's 7:30 in the morning and I have to get myself to Texas. Let me close with a great story I heard from all the Adults with nevi who recently met in Las Vegas for a great party. A bunch of them, ten in all, were walking down the street in Las Vegas on their way to dinner and a show. A car stopped and a man jumped out of the car, ran up to them and asked "Do you all have giant congenital nevi??"
I can only imagine what went through their heads at that instant.
"My daughter has one, too!" the dad exclaimed. There followed much pleasant conversation, and another life changed. All I want to say is "keep up the good work," and keep an eye out for opportunities to improve the lives of others affected by big nevi. You, reading this, are the ones who are making the difference. Thank you all so much!
Nevus love,
ridebrianride.com
Brian's story on our web site
Well, it's 7:30 in the morning and I have to get myself to Texas. Let me close with a great story I heard from all the Adults with nevi who recently met in Las Vegas for a great party. A bunch of them, ten in all, were walking down the street in Las Vegas on their way to dinner and a show. A car stopped and a man jumped out of the car, ran up to them and asked "Do you all have giant congenital nevi??"
I can only imagine what went through their heads at that instant.
"My daughter has one, too!" the dad exclaimed. There followed much pleasant conversation, and another life changed. All I want to say is "keep up the good work," and keep an eye out for opportunities to improve the lives of others affected by big nevi. You, reading this, are the ones who are making the difference. Thank you all so much!
Nevus love,
Mark Beckwith
Executive Director
Nevus Outreach, Inc.
(918) 331-0595 office
(918) 440-6123 cell
Executive Director
Nevus Outreach, Inc.
(918) 331-0595 office
(918) 440-6123 cell
P.S. Okay so I can't NOT tell you about 4 year old Nathalie in Canada who put up a refreshment table at her family's yard sale last month. She raised almost $50 for Nevus Outreach selling water, juice boxes, popsicles and Rice Krispies Treats! Nathalie has a giant nevus.
