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 Becky Abbott, Amy Leverenz and Marc Steingesser for representing the National Foundation for Ectodermal Dysplasias (NFED) at different events.
Becky Abbott joined other families affected by rare diseases, legislators and medical staff on Rare Disease Day, February 28, at the state capitol in her home state of Wisconsin. She was there to raise awareness for ectodermal dysplasias and advocate for dental coverage in legislation.
My son, Aidan, shared his story of how ectodermal dysplasias affects his life and why he wants to have dental treatments and teeth. I was able to share our families’ struggles with insurance coverage for dental treatments and why it is time for legislation to change to allow our families to receive the treatments and teeth they so desperately need. We also met another family who lives only five miles from us, whose son also has ectodermal dysplasia. We were able to talk with legislators about our insurance fight. Everyone was very receptive to the information we shared. We hope that each NFED family will take this same opportunity to share their story and fight for change this summer on Capitol Hill. – Becky
We are grateful to Becky for attending this Rare Disease Day and for her leadership in creating our new Advocacy Tool Kit.
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.