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Join Us In Beautiful Colorado Springs, Colorado
For The 2010 National Family Conference!
National Family Conference scheduled for July 22-24, 2010
The NFED is headed to Colorado Springs, Colorado!
Start saving your pennies and put July 22-24, 2010 on your calendar.
If you attend this Family Conference, you will benefit from:
* Stimulating discussions, medical, dental and research updates.
*
Sharing personal connections with other who understand.
*
Meeting others to exchange ideas, support and advice.
*
Gaining knowledge of helpful products and resources.
*
Participating in research to advance our understanding of the ectodermal dysplasias.
Kids’ Camp
Special programs for the affected children and their siblings are an integral part of the conference. Each day, the children enjoy activities, entertainment, and refreshments.
Conference Location
The conference will be held at the Cheyenne Mountain Resort (www.cheyennemountain.com/). The Cheyenne Mountain Resort is only 15 minutes from the Colorado Springs Airport and 70 minutes from Denver. The Resort’s on-site recreational facilities include an18- hole Pete Dye championship golf course, 18 tennis courts (six indoor), three heated swimming pools (one indoor), two Jacuzzis, squash and racquetball courts, and a fully equipped fitness center, massage and spa facilities, and mountain bike rentals. Water sports on the 35-acre recreational lake include sailing, paddleboats and fishing.
Conference Cost
The Registration fee includes your sleeping accommodations (and all taxes, services charges and the facility fee) for Thursday, July 22nd and Friday, July 23rd, dinner on Thursday evening, breakfast, lunch and dinner on Friday and breakfast and lunch on Saturday, all conference materials, clinical consults, workshops, general sessions and all Kids’ Camp activities.
Single Occupancy Adult |
$550 |
Double Occupancy Adult (includes 2 adults) |
$760 |
Additional Child (age 4 and under) |
FREE |
Additional Child (age 5-12) |
$70 |
Additional Adult (age 13 and up) |
$150 |
Room reservations for before or after July 22-23 are $184 per night for single or double rooms. Make plans to join us and explore all that Colorado Springs has to offer.
L. Marie Heard Education Scholarship Program
We Congratulate Our 2010 Scholars!
Ryan Allen - Ethelyn Draser Boyd Scholar
Jordan Dahl - Louis J. and June E. Kay Scholars
Jacinda Kinnunen
Michael Putney - Clarence and Marion Bayles Scholar
Caitlin Sarubbi - Louis J. and June E. Kay Scholars
Alexa Stone
Kayla’s 5K Event to Benefit the NFED
Sunday, June 6, 2010
Starkey Park Shelter 5/Bike Trail
Race starts at 7:30 a.m. Registration - $25 before June 1.
For more information, contact Carol at the NFED.
Save the Date: Saturday, October 2, 2010
Miles & Smiles
Miles & Smiles Bicycle Ride and Rally, a cycling event in Mascoutah, IL, for the benefit of the NFED and the specialized Dental Treatment Centers at Saint Louis University Center for Advanced Dental Education and Southern Illinois University School of Dental Medicine.
• 7, 15, 30 and 60 mile routes
• Riders at all levels welcome
• Food and Fun after the Finish Line
• Sponsor Inquiries welcome – contact harry at 618-566-2020 or harry@nfed.org
• Registration opens soon
Ectodermal Dysplasias
International Registry Launched
We are excited and proud to have launched the first ever Ectodermal Dysplasias International Registry on March 1, 2010. We need every individual affected by any ectodermal dysplasia to participate in the Registry. TO LEARN MORE...
Camp Discovery 2010
This year the American Academy of Dermatology is proud to offer four sessions at Camp Discovery for your people who have chronic skin conditions and who are between the ages of 8 and 16. Under the expert care of dermatologists and nurses, Camp Discovery gives campers the opportunity to spend a week with other young people with skin conditions, while participating in everything from swimming and fishing to horseback riding to lots of camp games and just plain fun!
There is no fee to attend this very special camp. Full scholarships, including transportation, are provided by the Academy through generous donations from its members, outside organizations, and individuals. All campers must be referred by their dermatologists.
\ For more information about attending or volunteering please visit the camp Web site at or contact Janine Mueller at 847-240-1737 or jmueller@aad.org.
EDI200: Replacement Therapy Gives Hope for Successful Treatment of HED Symptoms
Future generations of families affected by X-linked hypohidrotic ectodermal dysplasia (XLHED) may have an option of a treatment that would eliminate the symptoms of the condition. The National Foundation for Ectodermal Dysplasia is thrilled to be working with Edimer Pharmaceuticals, Inc. whose vision is to deliver a significant and durable improvement in the health and quality of life to future generations affected by the rare genetic disorder, XLHED. MORE