Neurofibromatosis Midwest

Coming Together for Advocacy!

Posted By NF Midwest | On December 8th, 2015

Thursday and Friday, December 3rd and 4th, were just amazing days for me, NF Midwest and the entire NF Community. We made great strides in advancing the neurofibromatosis cause, and all the organizations involved came together in a promising and inspiring way.

All day Thursday and also on Friday morning, I was very excited to join Tracy Wirtanen of the Littlest Tumor Foundation and her incredible “little” but enthusiastic team of volunteers. We trekked around the offices of the United States House of Representatives delivering invitations to a special briefing on Neurofibromatosis and the federal research funding that comes through the Congressionally Directed Medical Research Program (CDMRP).

Then on Friday afternoon, I joined Tracy and representatives from many other NF organizations to stand together at the briefing in support of our NF community. These organizations included NF Midwest, The Littlest Tumor Foundation, The Children’s Tumor Foundation, The NF Network, Texas NF Foundation, and The NF Team.

The briefing was standing room only, attended by approximately 45 staffers from various House offices, which is a great turn out! We heard presentations by Roger Packer MD, head of the Gilbert Family NF Institute at the Children’s National Medical Center; Naba Bora Ph.D., Director of the NF Research Program at the Department of Defense; Jill Morris, Ph.D., Program Director at the NIH National Institute of Neurological Disorders and Stroke; and Annette Bakker, President and Chief Scientific Officer at the Children’s Tumor Foundation.

This was an amazing show of solidarity and support for neurofibromatosis. NF Midwest is proud to have supported it and we thank the Littlest Tumor Foundation for putting it together. We also thank the presenters, and Congressmen Ribble (WI), Pocan (WI), and Gutierrez (IL) for hosting the briefing.