If you have read my blog for any length of time, you have probably read that my son and I are both affected by Hay Wells Syndrome, which is a rare skin disorder and one of the Ectodermal Dysplasia syndromes. As such, our family is involved with the National Foundation for Ectodermal Dysplasias (the NFED) and do whatever we can to support the NFED.
We just registered to participate in the Miles & Smiles Bicycle Ride and Rally to benefit the National Foundation for Ectodermal Dysplasias (NFED) on Saturday, October 2, 2010 at Scheve Park, Mascoutah, IL.
About Miles & Smiles… Miles & Smiles is a bicycle Ride and Rally to benefit the National Foundation for Ectodermal Dysplasias (NFED) and our patients of the Dental Treatment Centers at Saint Louis University and Southern Illinois University. Miles & Smiles routes have been charted by experienced riders and ride coordinators. Routes are typically smooth and level with slight elevation changes, with one exception that presents the challenge of a few hills. A choice of four routes of varying lengths will be suitable for all—families with children, fitness riders and serious trainers. Event will be held rain or shine!
About The NFED… The NFED is the only organization in the United States dedicated to serving individuals affected by ectodermal dysplasias, their families and care providers. From Mascoutah, Illinois, we serve thousands of families in the United States and 70 countries throughout the world. For information on the condition and people affected see www.nfed.org.
SIU and SLU Dental Treatment Centers… Since ectodermal dysplasias are rare conditions and thus rarely seen by practitioners and students, these Dental Treatment Centers play key roles both in treatment of patients with exceptional needs and in providing critical education and experience for dental professionals and students. Your support will help us fulfill our mission.
Join us. Combine a great ride with our goal of raising awareness of ectodermal dysplasias and funds for the extreme dental treatment required by affected individuals.
Brian and I will be riding our bikes and pulling Mister and Sister along in their super cool bike trailer.
We are UBER EXCITED about the opportunity to raise funds for the NFED while enjoying a bike ride with the kids.
We are asking our friends and family to partner with us by either registering for the ride or by making a donation of $5, $10, $20, or $50 to the NFED on our behalf.
You can partner with us, as well…
If you live in the St. Louis Metro area and would like to join us for the ride, you can register for the Miles & Smiles ride. Or you can donate by visiting the NFED’s online donation page at http://www.nfed.org/donation.asp. You can mark your donation “Miles & Smiles” or “in honor of Mister Higgins”