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Submitted by Monica Woodall
Our daughter Madison was born on June 6, 1999 with Moebius syndrome. In addition to feeding issues, she had bilateral club foot. At three months old, Madison underwent the Nissen Fundiplication procedure to address reflux and had a G-tube placed for supplemental feedings due to her low weight. Surgical correction on both feet was also performed after unsuccessful attempts of serial casting at the age of nine months. Madison is now 10 years old and going into the 5th grade. She plays the piano and cello, loves to ride horses and despite her physical limitations, she can outrun some of her classmates!
We have attended every Moebius syndrome conference since Madison was one in 2000. Besides the wealth of knowledge we gain from the conferences, we have met many wonderful people that we consider to be some of our dearest friends. We always look forward to attending the conferences and decided to take on a different role in 2010 by hosting the conference in the Denver area. We are honored to be given this opportunity and excited to WELCOME everyone to the beautiful state of Colorado. We have chosen the Omni Interlocken in Broomfield, Colorado for the 9th International Moebius Conference and we look forward to your attendance
Cost may be an issue for some families, so we wanted to share what we did in 2008 for the New Jersey conference. Initially when we started to check airfare, it appeared that it wouldn’t be a family vacation as it had in the past and that in fact Madison and I may not be able to attend. We were devastated! Madison immediately started brainstorming and suggested we have lemonade stands and garage sales to raise money. That was when I realized how important the conference was to Madison and our family. I knew that we had to go, so I started brainstorming as well. I contacted nine airlines and after eight “no’s” I received a call with a “YES.” We were given two round trip tickets to New Jersey since we were attending a medical conference with specialist consultations. We also did a cookie dough fundraiser through a local company in Ft. Collins, Colorado. With those relatively quick and easy options, we raised enough money to cover our registration and hotel. Our trip was paid for with a little hard work in a matter of two to three weeks.
I ask everyone who is considering not attending a conference due to finances to be creative. All of the fundraising events not only financially benefit your trip, but at the same time you are promoting increased awareness and understanding of Moebius syndrome and the communities it affects. You have a year to fundraise. Hold garage sales, work for the neighbors, babysit, find local fund raisers, etc. You won’t want to miss the next conference.
After the success of Moebius Syndrome Awareness Day, what are your plans for Rare Disease Day?
Need any ideas?
Check here: eepurl.com/jAD0f
Organizations such as NORD and the Global Genes Project are doing really great projects in the US for next week. I know a few Moebius syndrome-related photos have been added to the "Hope - It's In My Genes" photo project, which I think will be given to the NIH next week: ow.ly/9gbnP. And I love the wear jeans for genes idea. So there are many ways to get involved!
We are sharing with our readers the patient stories the Global Genes Project is publishing. We've also put out some hope photos for the global genes project. I wrote a story about what having a rare disease day means to me. www.manyfacesofmoebiussyndrome.com/why_i_s... For MSAD we had people handing out flyers telling people about World Rare Disease Day.
Robert if you would like us to post something more for World Rare Disease Day on the Many Faces Website shoot me an email at [email protected]
moebiustim1963 | published 23 days ago | Originally written in English Local Man Reaches Out To Others With Rare Disorder
Original newspaper article:
robpleticha | published 28 days ago | Originally written in English 10th Moebius Syndrome Conference in Philadelphia
Registration is now open for the July 13-15 conference
Twenty scholarships will be available to first-time adult conference attendees who have a financial need. The recipient can be an adult with Moebius syndrome or the parent of a child with Moebius syndrome who has never attended a Moebius Syndrome Foundation conference.
The $500 scholarship will come in the form of a waived $200 adult registration fee plus a $300 debit card to be issued at the conference registration desk.
You can request a scholarship when conference registration begins in February 2012. Although conference registration will be available online through this website, if you plan to request a scholarship you must use a paper registration form. The paper registration form will be available in the conference registration brochure, which will be posted on this website and mailed to everyone on the Moebius Syndrome Foundation's mailing list in the United States and Canada.
Scholarship requests will be accepted in the order in which they are received, so it is important that you mail in your registration form early.