Tuesday, April 23, 2013

NF Forum 2013

This past weekend we attended our first NF Forum, a weekend long patient and family support meeting  where we learned from the best medical experts about living with neurofibromatosis and the latest medical advances and research initiatives.  Just before leaving for the Forum, we received the results of our parental genetic testing letting us know that Big Philip also has NF.  The good news is that at age 38, he has no known symptoms and has not had any serious health concerns in his life.  He will have a clinical appointment with Dr. Korf in the coming weeks, just like Helen, just like Little Philip.

Over the past year, we connected online with other families around the country and in some cases, the world, through the NF Moms Rock and NF Dads Rock facebook groups.  Meeting them in person, hugging them, watching our kids play together, the experience was so very rewarding.  We grieved together for the challenges people with NF can face due to tumors, bone deformities, learning disabilities, blindness, deafness, severe cosmetic concerns, just to name a few.  I grieved for one mother I met who loss her husband several years ago to an NF brain tumor that had turned malignant.  She was there with her beautiful son, a spitting image of his father, who also has NF.  Despite the sadness, the weekend was also about celebrating recent medical advances and the dedicated physicians and the research community that make that happen through their recent clinical drug trials and other research initiatives.  Physicians from the Mayo Clinic, Boston Children's Hospital, Vanderbilt (go 'Dores) to name a few.  These physicians presented their research to us, offering us hope, sharing their passion for finding a cure for NF.

On Sunday our Nashville family, the Gaffrons and Extons joined us in the NF Walk, where we raised over $1400 for the Children's Tumor Foundation's research and advocacy efforts.  It was a beautiful day and coming together with our friends and family and it was a beautiful way to bring hope to our own lives and the lives of other NF families.

And now we will begin ramping up our efforts to establish and Alabama NF Support Chapter through the Children's Tumor Foundation.  We have connected with so many families here in Alabama that we feel compelled to do this, to offer hope, encouragement, support for the newly diagnosed and for families facing the challenges of managing NF in their own lives or the lives of their family members.  We have a facebook page, Neurofibromatosis Alabama and have established an email for families and patients in Alabama to contact us at nfalabamactf@gmail.com.  We will work with UAB Genetics on the NF Clinic Days to raise awareness and support and to continue to educate ourselves and other families about NF.  One day, there will be a cure and we pray that our efforts in some way, play a small part in helping this happen.

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