By John A. Stith, M.D. , Professor, Pediatric Otolaryngology
Saint Louis University School of Medicine, NFED Board of Directors and Patient Care Council
I have been privileged to serve the NFED as a member of the board of directors for several years. It seems like yesterday when Dr. Tim Reichert invited me to consider becoming a board member, and invited me to attend a meeting.
Then, Mary Kaye Richter visited my office at Cardinal Glennon Children’s Hospital and told me more about the organization. I must say she convinced me of the good that the NFED does for its members and of the kindheartedness of those who work for it.
And so I decided the organization and its people were more than worthy of my time and efforts. Over the ensuing years, I have found this to be overwhelmingly true.
Since my initiation as a board member I have attended Family Conferences, Board meetings, banquets and other social events for the NFED, and clinical conferences on general NFED topics, Goltz syndrome, and erosive skin manifestations of the ectodermal dysplasias.
Of these events, the most fulfilling one for me was the family conference in O’Fallon, Ill. several years ago, in which I gave a talk on ear, nose and throat problems associated with ectodermal dysplasia. It was quite gratifying to speak to an audience of parents, who had affected children, and to interact with them. They seemed to be very appreciative of my spending time with them and answering some of their questions. We had our board meeting on-site after my presentation, and I have remembered that as my best personal experience with the organization.
So many good things come about from the NFED in terms of networking affected families and passing on useful information. One of the services it provides, for example, is the review of a member’s health insurance for help with pre-certification of treatment for problems related to ectodermal dysplasia.
Also the organization helps families find dental treatment centers and its Patient Care Council, comprised of medical and dental professionals, and of which I am a member, review dental treatment plans to consider the propriety of the plans and possible financial assistance based on need and available funds. This committee also considers applications for financial assistance with wigs and air conditioning units. These are but a few of the activities of the NFED.
Family Conferences and camps for the children are favored events in which families of those affected can network with others who share in the association of affected individuals and share their lives. Besides socializing at these events, they can also attend special conferences devoted to learning about the problems associated with these disorders and what can be done to ease the burden of them.
Networking also occurs at the many other local fundraising events staged around the country for fun and the advancement of the organization. Of course, another means of networking and getting useful information for members is to call or email the competent staff of Mary Fete at the NFED office. They are always there to assist and give direction where needed.
And so there are many worthy services provided by this organization. It also has a Scientific Advisory Council that reviews research proposals and awards grants to worthy scientific projects related to the ectodermal dysplasias. This has been done with the goal of finding better treatments and ultimately finding a cure for these rare disorders.
These are some of the reasons I feel privileged to serve on the Board of Directors of the NFED. May the NFED continue to thrive and provide needed services to its members, who gain great benefit from the organization.
Join us! Go to our website and sign up to volunteer https://support.nfed.org/hh-application . Are you interested in volunteering / fundraising? You can also contact email@example.com and/or firstname.lastname@example.org or call Lea directly at 618-566-6871.
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