Advocacy continues to be a major emphasis for us in 2017. While we continue to plan for our Ectodermal Dysplasias Advocacy Day on Capitol Hill in July, we also recently participated in some other advocacy days. We are grateful to Amy Leverenz and Marc Steingesser for representing the National Foundation for Ectodermal Dysplasias (NFED) at different events.
NFED mom, Amy Leverenz celebrated Illinois Rare Disease Day in Springfield, Ill. with other rare disease advocates from around the state.
Marc Steingesser recently represented us a the American Academy of Dental Research Advocacy Day. Dentists and patient advocates met with legislators to thank them for supporting funding of past dental research through the National Institutes of Health and to request increased future funding for the National Institute of Dental and Craniofacial Research. Examples of supported dental research included the effects of e-cigarette smoking on oral health and development regenerative therapies for teeth. Thank you, Marc, for your continued efforts to help us advocate!
I attended the AADR advocacy event which went quite well. Legislators in Maryland (and most legislators in general) are supportive of maintaining and hopefully increasing funding to the NIH for ongoing and future medical/dental research (although they cautioned that President Trump’s spending/cutting proposal will present challenges). Personal stories from NFED advocates regarding difficulties obtaining coverage for dental as medical care should be well received this summer. – Marc
Thank you to NFED mom, Amy Leverenz, who participated in Illinois Rare Disease Day and represented ectodermal dysplasias.