WATCH: Transverse Myelitis Association Fundraising Gala at Kennedy Space Center Set Aug. 24
By Space Coast Daily // July 16, 2019
25th anniversary of Transverse Myelitis Association
SPACE COAST DAILY TV’s Chris Bonanno was at the Kennedy Space Center Visitor Complex Rocket Garden talking with Jason Robbins of the Transverse Myelitis Association about the organization’s big Gala event at the Apollo/Saturn V Center of the Kennedy Space Center on August 24. CLICK HERE TO BECOME A SPONSOR OR PURCHASE TICKETS
Eighteen-year-old Sarah Robbins will be among the 400 guests expected to attend the Transverse Myelitis Association’s fundraising gala at the Kennedy Space Center.
BREVARD COUNTY, FLORIDA – The Apollo/Saturn V complex at Kennedy Space Center is all about space heroes who met tremendous challenges and flew with them.
On August 24, the Apollo/Saturn V Center will also be the site of a celebration of another set of heroes, the children and adults who daily struggle with the ravages of Transverse Myelitis and similar serious neuro-immune disorders that strike without warning and take no prisoners.
By inflaming the critically needed spinal cord, transverse myelitis turns victims lives upside down, robbing them of their ability to walk and perform routine bodily functions, including even breathing.
Lung issues, urinary and bladder infections and bowel obstructions are common with transverse myelitis. Some victims must live on ventilators for the rest of their lives.
It can affect any age, gender or race, and no effective treatment yet exists to restore the spinal cord’s myelin once it is destroyed. There is currently no cure.
Approximately 1,400 new cases of transverse myelitis are diagnosed each year in the United States. Eight years ago, Sarah Robbins was among the new cases.
Eighteen-year-old Sarah will be among the 400 guests expected to attend the Transverse Myelitis Association’s fundraising gala at the Kennedy Space Center.
CLICK HERE TO BECOME A SPONSOR OR PURCHASE TICKETS
The Merritt Island resident has been facing challenges since she was born with a rare form of microcephaly, a neurological condition that prevents the brain from ever fully developing.
Her doctors never expected her to walk, but she proved them wrong, not only walking, but also performing in dance recitals.
However, on November 18, 2011, then 10-year-old Sarah was getting ready for school when she walked into her parents’ bedroom and collapsed. A frantic visit to Arnold Palmer Children’s Hospital confirmed a terrible diagnosis. Sarah has transverse myelitis.
“The damage was done in a matter of moments. We were told we were lucky that the acute onset did not take place in the cervical part of her spine, or she may have needed permanent assistance to breathe.”
A fighter since birth, Sarah has coped with being paralyzed from the waist down with boundless grace and cheerfulness.
“We call her our princess warrior,” said her father. “She’s got a smile on her face all the time.”
One of the first organizations that Robbins and his wife, Tina, turned to for help after Sarah’s initial diagnosis was the Transverse Myelitis Association, formed 25 years ago by Sandy Siegel, after his wife, Pauline, suddenly and inexplicably fell to the floor and was paralyzed.
The day doctors diagnosed Pauline with Transverse Myelitis was the first time Sandy had ever heard of the term.
“We knew no one who had this disorder, we had no idea what Pauline’s future held for her,” he said.
“We received no answers from Pauline’s doctors. They seemed unfamiliar with the disease. We were frightened about what had happened to Pauline and we had access to absolutely no information to be able to educate ourselves about this disorder. There was no medical institution in the world that had a Transverse Myelitis center. There was not a single physician who specialized in Transverse Myelitis. There were no researchers doing any studies on Transverse Myelitis.”
Through the internet, Siegel connected with four other families going through the same journey.
From their experiences, the Transverse Myelitis Association was born 25 years ago to provide immediate access to comprehensive and accurate information and support and to encourage the development of specialists who can offer care and research on this and other similar and very little understood disorders.
Robbins will forever be grateful for the Association’s help as his family tried to make sense of medical assertions that there was no treatment plan for anyone suffering from these types of disorders.
“When I called, Sandy himself spoke with me,” he said. “He told us where to get therapy and what to ask for to best help Sarah.”
In gratitude, Robbins jumped right into their board of directors.
Among his duties is coordinating fundraisers that will help the Association spearhead fellowships to train physician in this very specialized field, to fund patient support groups and to provide Quality of Life Family Summer Camps each year for children affected with the disorder. Sarah participated as a happy camper four times at this annual event.
CLICK HERE TO BECOME A SPONSOR OR PURCHASE TICKETS
Jason and Tina Robbins this year have raised the bar on their fundraising orchestration with the Apollo/Saturn V Center gala and dinner experience, which celebrates the 25th anniversary of the Transverse Myelitis Association.
“We were very fortunate to be selected as one of the two charity events that the Center hosts each year,” said Jason.
“Guests will enjoy a once-in-a-lifetime experience.”
The gala, to be held from 6 to 11 p.m. on Saturday, August. 24,2019, will draw guests, including physicians and medal-winning paraolympian athletes, from around the country.
Guests will enjoy front-row seats at the 100,000-square-foot Apollo/Saturn V Center as the rest of the country celebrates the 50th Anniversary of the Moon landing.
Robbins has assembled an unforgettable evening that includes the appearance of Iron Chef Lee Hillson, who will travel from Phoenix, Arizona, especially for the event.
“Lee is working on a menu with the KSC culinary team and will be working at an action station for a side dish,” said Robbins, a friend of Hillson.
The Gala will also include unique live and silent auction items such as a trip to New York City that includes a high-end hotel stay to see Billy Joel in concert from top-notch seats, a VIP package to the Carrie Underwood concert in Chicago, a trip to Niagara Falls, with a visit with Dr. Phil included, an Imagine Dragons signed guitar, and an original E.T. movie poster signed by the cast and Steven Spielberg, among other treasures.
Exciting musical entertainment will be announced soon.
In part because of Kennedy Space Center’s role as host sponsor, 100 percent of proceeds from the Gala will go directly to support the Association’s efforts.
“We are dedicated to raising awareness and funds to support the mission of the TMA,” said Robbins.
Sarah will be at the party, beaming as usual.
“Her mission in life is to spread love,” said her proud dad.
Tickets to the 25th Anniversary Transverse Myelitis Association Gala and Dinner Experience are $150 per guest. Sponsorships, which start at $2,000, are welcome.
CLICK HERE TO BECOME A SPONSOR OR PURCHASE TICKETS
SPACE COAST DAILY TV’s Chris Bonanno was at the Kennedy Space Center Visitor Complex Rocket Garden talking with Jason Robbins of the Transverse Myelitis Association about the organization’s big Gala event at the Apollo/Saturn V Center of the Kennedy Space Center on August 24. CLICK HERE TO BECOME A SPONSOR OR PURCHASE TICKETS
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