2011 Annual SMA Conference June 23rd – 26th, 2011. Walt Disney World Swan Resort, Lake Buena Vista, Florida.
This year’s SMA conference in Disney World was certainly our most magical and successful conference yet. The final attendance number was 1,550, which is an amazing record number of attendees!
The Spinal Muscular Atrophy Conference in Florida was a fantastic success with over 1,550 families and researchers in attendance! This was the largest conference in the world for those affected by SMA, and also for those involved in providing support and care for SMA patients. There is no other program like it in the world for SMA families. The interactions between the researchers and families at one conference were so special. The annual conference also provided our children an opportunity to make new friends and have a great time. There were so many wonderful events that made this conference the most memorable and successful conference to date.
At this year’s conference, before all of the families arrived, we offered a Newly Diagnosed Program specifically for families diagnosed since 2010. It was a wonderful way to slowly introduce new families to the conference as well as other families and professionals on a much smaller scale. This program included:
- An Introduction to the Conference and SMA Community
- Understanding Genetics and the Disease
- Choices, Evidence, Hype and Hope
- Life after Diagnosis - Parents Share Their Journey
- A Meet and Mingle Session with Families, Doctors, Chapter Officers and Board Members
- Optimal Care for SMA Type I
- Optimal Care for SMA Type II and Type III
- A Grieving Parents Session
While the conference was in session for the families, The 15th Annual International SMA Research Group Meeting was being held in the same hotel, which is the biggest SMA research conference in the world. Families of Spinal Muscular Atrophy organizes the conference, and financially underwrites the meeting by covering hotel, travel and registration for all research presenters. 225 researchers attended from around the world. These researchers represent 70 institutions in total, 14 biotech and pharmaceutical companies, and 11 countries worldwide. The personal connections made between families and researchers meant so much to everyone who attended.
There were so many highlights at this year’s conference. The Conference started off on Thursday with an amazing Meet and Greet. This year’s Meet and Greet was certainly the most exciting one to date. Attendees enjoyed a dinner, as well as many snacks such as a Nacho Bar, Popcorn, Cotton Candy, and Sno Cones. There was a brief welcome for attendees as we began the ever so popular Researcher Relay Race. The Researcher Relay Race started off the conference in such a positive way! All of the children and SMA researchers had fun racing each other while conference attendees cheered them on.
Ice cream was offered to all attendees as the most exciting part of the evening began – The Family Fun Fest and Disney Character Event. The Family Fun Fest was absolutely a huge hit! As each child entered the fun fest, they received a Mickey Balloon, as well as Mickey Ears and a Mickey pen to use when they received autographs from the Disney Characters. Games were adapted so that every child could participate and win great prizes. The children and adults all had a great time playing games, socializing, eating many treats, and every child left with a large bag of goodies! Most children, and even many adults, received Disney Character Tattoos. There was a balloon Artist who was amazing and offered everyone incredible creations.
Mickey Mouse, Minnie Mouse, Donald Duck and Daisy Duck joined the fun for families to enjoy for the final two hours of the evening. Attendees were able to take photos with the characters and receive their autographs, which made many children extremely happy!
Friday and Saturday offered families informative workshops and sessions. There were over 35 workshops offered during the conference covering the latest information on critical topics in SMA Care including:
- Sharing your SMA Type experiences, as well as a session for Adults with SMA, Grandparents of SMA children and a session for grieving parents.
- Effective IEP’s in a Nutshell
- Life Care Planning
- Pre-Genetic Diagnosis
- Hands on Physical Therapy
- Toy Adaptation
- Becoming College Ready
- It’s a Wonderful Life
- SMA Kids Talk it Out, Session I and Session II
- Siblings Talk it Out Workshop
- Orthopedic Management
- Healing the Grieving Heart, Part 1 and Part 2
- Learning to Drive with SMA
- Good Nutrition for Children who Eat by Mouth
- Good Nutrition for Children who are G Tube Feeders
- Medical Management of Adults with SMA
- Breathing Basics and Care Choices for SMA Type I
Some of the presentations and videos from the 2011 Annual SMA Conference will be available soon online.
The Families of SMA South Florida Chapter was able to recruit local Walmart Stores to donate many items for the conference. One of the wonderful items donated was many pallets of bottled water. Because of this donation, we were able to pass out thousands of bottles of water to families throughout the weekend. These certainly helped keep families hydrated when they were outdoors or at the Disney Parks.
Friday evening was our dessert party at Epcot. The dessert party location was moved indoors since the evening had an unexpected rain storm. Thousands of glow sticks were passed out to attendees along with some purple and orange pom-poms. An amazing dessert buffet was served with large “tie-dye” cupcakes, chocolate brownies, rice crispy marshmallow squares with butterscotch chips, banana pudding trifle, along with beverages for all children and adults. Rain ponchos were passed out to attendees and those who were adventurous enough to go outside in the rain to view the fireworks and laser show. Although most people got a bit wet from the rain, it was a great night to be together and celebrate.
This year’s Children’s Program was extraordinary and, without a doubt, the best that we have ever had! Thanks to so many of our incredible volunteers, all of the children had a fabulous time. Children stayed busy with countless arts and crafts projects, many fun toys, exciting movies, fun activities, bubbles, 3 Wii stations and so much more.
There was fantastic entertainment for the children to enjoy such as a face painter, a highly interactive stilt walker, a magic and comedy show, balloon making, build your own bear projects, a Knight’s adventure which included face painting, balloon twisting and a magic show fit for a King!
The children enjoyed dance lessons and performed a fun dance during the Children’s Program.
On Saturday evening we held the Movie and PJ Party for families. Each person was greeted with a bag full of treats, along with water bottles and a fun candy table for them to choose items from. Families scattered pillows and blankets on the floor for an official pajama movie night! Popcorn popped all night for families to eat as they watched the movie, Toys Story 3, which was a huge hit for the children.
Something that made this year’s conference extremely special was all of the beautiful signs that were displayed all over the hotel. Expo Convention Contractors, of Miami, FL, Jennifer Miller Smith and Aaron Smith donated all of these signs to Families of SMA, worth over $30,000! There were spectacular signs and displays for both the Family Conference and the Researcher Conference. They also donated wonderful Pipe and Drape to display all of our conference banners at Thursday’s Family Fun Fest and Carnival, in our Children’s Program, as well as in our meeting spaces. Aaron worked so hard all weekend putting up each sign, banner and drape, just to then take them down and move them for the next event. He helped for countless hours all weekend to ensure this conference was so wonderful. We cannot thank Aaron and Jennifer enough for their continuous efforts throughout the conference, which was such an important part of making this conference a success!
We were honored to have SMA families and Researchers attend this conference from all over the world. There were individuals attending this conference from over 23 other countries including: Argentina, Australia, Brazil, Canada, China, Czech Republic, Denmark, France, Germany, Greece, Iceland, Israel, Italy, Mexico, Netherlands, Pakistan, Slovakia, South Africa, Spain, Switzerland, United Kingdom, United States and Taiwan.
Sunday started off with an exciting Disney Character Breakfast. Buzz Lightyear, Woody, Jessie and Bullseye, four of the Toy Story characters, were able to join our conference! Children and families took photographs with the characters and many received autographs from them.
The latest research developments were given to families at Sunday’s Closing Session which included a Research Update and Researcher Q & A. Leading experts in the SMA Research Community answered questions from SMA families. A summary and video of Sunday’s Closing Research Session will be given soon on the FSMA website.
Cindy Bobolz, grandmother to Nora Gooden, and Bernice Croston, great aunt to Nora, handmade the most beautiful quilt to be raffled off at the conference! It was displayed at the registration area for all attendees to see. Not only was it beautiful to look at all weekend, but it raised funds for Families of SMA as well! Beverly Venedam, a long time volunteer and Aunt of Erin Trainor, was the lucky winner of the quilt.
These scholarships are all made possible because of the funding and support from the Erin Trainor Memorial Fund, which was specifically created to help more families attend this amazing conference. The Erin Trainor Memorial Fund exists to provide scholarships for newly diagnosed SMA families to attend The Annual SMA Conference. Families of SMA has been coordinating this Conference since 1990 and in this time, has become the SMA conference to attend on an annual basis for families, clinicians and researchers alike. Not only will ETMF allow families the opportunity to participate in this three-day event but it will also provide each with the opportunity to gather critical care and daily living information from experienced health care professionals as well as other families living with a similar diagnosis.
Families of SMA is so honored to receive funding from the Jacob Isaac Rappoport Foundation, in memory of Jacob Rappoport, to support this important program. Last year, their funding allowed nearly 200 individuals, all of whom had a family member recently diagnosed with SMA, to attend this important conference. We are thrilled that they have again supported this program to allow more newly diagnosed families to attend the 2012 Annual SMA Conference and experience the benefits of this amazing conference. To learn more about the Jacob Isaac Rappoport Foundation, please click here.
The Jacob Isaac Rappoport Foundation and the Wyatt Kyle Sutker Foundation hosted another luncheon this year inviting all type I families to attend. It was another great way to provide type I families with the opportunity to meet and spend time together in a relaxed and friendly social setting. There were over 200 attendees at this special luncheon, who had a wonderful time interacting and supporting with one another.
We would like to take this opportunity to thank all of the amazing companies and organizations for their generous support of the 2011 Annual SMA Conference. These sponsors and vendors are partners in our community who are critical to success in the battle against SMA. Many of these partners contributed to scholarships and family assistance programs for the 2011 Conference and for travel and lodging expenses for the International SMA Research Meeting. Without their support many patients, families and researchers would never be able to attend and join together in this fantastic meeting.
The 18 vendors represented at this year’s conference was a record and an amazing way to provide another service to families attending the conference by providing access and information on companies whose products may be of interest. We had a great variety of vendors displaying their products which offered families the ability to test out and learn about what each company had to offer.
We offered a wonderful incentive to all attendees who completed a conference survey this year. Families of SMA received a very generous donation of IPad’s, so any conference attendee that submitted a conference evaluation form before Sunday’s Researcher Q & A, had their name entered into a raffle to win a new IPad! Bonnie Shiesley, mom to Kale who has SMA type II, was the lucky winner announced that day, so Bonnie and her family were able to bring home a great new IPad. A second winner will be drawn on Sunday, July 24th at 9:00pm Central Standard Time.
We were so very honored to have Kim Ruoff, an incredible photographer from Florida, attend the conference so that she could spend time taking photographs for SMA families. We had about 25 families who signed up and were able to have an individual photography session with Kim. Kim took thousands of photographs, each one so very special. These photos will be given to each family at no charge on a CD, so that each family can download and print all of these gorgeous images.
As always, the Annual SMA Conference would never be possible without the assistance of our fantastic volunteers! Whether they helped with registration set up, working the incredibly chaotic Children’s Program, setting up and running carnival games, blowing up thousands of balloons, moving boxes, passing out glow sticks, or any of the other countless jobs that needed to be done, our volunteers were absolutely amazing.
Information on the 2012 SMA Annual Conference will be available soon at www.CureSMA.org
Click below to see a video about the hotel and Disney:
