Chicago Gala Organizers Hope to Raise $2M for Angelman’s Research

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by Larry Luxner |

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Danielle Pinders

Danielle Pinders, events coordinator for the Chicago-based Foundation for Angelman Syndrome Therapeutics (FAST), speaks Oct. 17 at a rare disease conference in Washington, D.C. (Photos by Larry Luxner)

Billed as “Chicago’s largest celebrity fundraiser,” the 2017 FAST Global Summit & Gala aims to raise a record $2 million toward finding a cure for Angelman syndrome (AS).

The annual extravaganza, which generated $1.3 million in donations last year, takes place Dec. 1-2 at the Hyatt Regency Chicago and is expected to attract more than 1,200 participants, said Danielle Pinders, events coordinator for the Foundation for Angelman Syndrome Therapeutics (FAST).

The two-day event consists of a free scientific summit from 9 a.m. to 5 p.m. on Friday, Dec. 1, along with a concurrent AAC (augmentative and alternative communication) “carnival” to learn about new ways to communicate with AS children who can’t speak. The AAC continues on Saturday, Dec. 2, from 9 a.m. to 4:30 p.m., alongside educational workshops scheduled from 9 a.m. to 2:30 p.m.

The concluding gala, on Saturday from 6 p.m. to midnight, features appearances by actors Colin Farrell, Jai Courtney, Retta and Zachary Levi. Other attendees at past galas included Vincent D’Onofrio, Rosie Perez, Wilmer Valderrama, Jesse Lee Soffer, and Richard Marx. Tickets to the gala — whose theme is “Unite for a Cure” — cost $175 each.

Danielle Pinders

Danielle Pinders, events coordinator for the Chicago-based Foundation for Angelman Syndrome Therapeutics (FAST), speaks Oct. 17 at a rare disease conference in Washington, D.C. (Photos by Larry Luxner)

“Because we are volunteer-driven, 100 percent of the funds we’re raising go directly to research,” said Pinders, noting that her organization has no paid staff. “It’s our community that’s our driving force and always has been.”

Pinders spoke to Angelman Syndrome News during the recent Rare Diseases & Orphan Products Breakthrough Summit in Washington, D.C. That mid-October conference was sponsored by the National Organization for Rare Disorders, to which FAST belongs.

A mother of three children including a 7-year-old son, Jace, with AS, Pinders noted the cause of the disease: a deleted or mutated UBE3A protein on the mother’s side of the 15th chromosome. Symptoms include profound intellectual disability, lack of speech, difficulties with motor control and planning, sleep and behavioral problems, and seizures.

Yet AS children often appear extremely happy, with frequent laughing and smiling also a symptom of the disease, whose incidence is estimated at roughly one in 15,000 births.

“A cure for Angelman syndrome requires the expertise and collaboration of the best and brightest minds from a variety of fields in science and research,” Pinders said. “FAST addressed this challenge by creating the first-of-its-kind FIRE [FAST Integrative Research Environment] Initiative. Once we had our FIRE team assembled, our success really started to flourish. It was the first time we had a tangible road map to a cure, something our supporters could see in real life.”

‘You have no idea what to expect’

The FIRE Initiative, announced in May 2013, began with four universities, 24 scientists, and $650,000 in funding. Since then, FAST has invested more than $2.5 million in this consortium of leading researchers working together to identify, characterize, and implement new therapeutics to treat and ultimately cure Angelman.

Pinders, formerly a professional fundraiser for the American Lung Association, was working for a children’s mental health agency in Burlington, Vermont, when her son was diagnosed with AS.

“The doctors said it’s bad luck. It was not inherited in either my side or my husband’s side. It was a genetic fluke and that’s what makes it so devastating,” she said. “You just aren’t prepared for it. It throws your life completely upside down. You’ve never heard of this condition and you have no idea what to expect — but you know there’s going to be tremendous challenges.”

She added: “Me and my husband chose to live in a world that was focused on hope and opportunities. You choose to live a little bit more in the moment.”

AS has left Jace completely unable to speak; he only started walking at the age of 4.

“He has epilepsy, and overall he’s in a first-grade, all-inclusive classroom but most have one-on-one support at all times,” Pinders said. “He runs, he plays soccer, he’s a very happy kid. It’s one of those odd characteristics of AS. But often, those laughs and smiles do not reflect our kid’s challenges. They can mask pain, frustration, and anxiety.”

Raising money for research

Caring for Jace is expensive. His special non-dairy, no-gluten, low-sugar, low-carb diet alone costs at least $25,000 a year. Thankfully, Pinders has private insurance so her son’s medical care is covered.

“There’s nothing more important than helping to raise money for your own child. As a parent, you’d do anything for your kid when one of them is not well,” said Pinders, whose two other children are healthy.

FAST was born in 2008 when doctors told Illinois mother Paula Evans that there was no hope for her daughter, Ainsley, who had been born with AS.

Ovid poster

Raquel Cabo, vice president of global market access at Ovid Therapeutics, with a poster of Ovid’s research on Angelman syndrome.

“Paula founded FAST after Dr. Ed Weeber cured AS in a mouse model in the lab. At that point there really wasn’t a lot of AS research being done. But when that occurred, Paula got on a plane, met with Ed and asked what would we have to do to make this happen,” Pinders said. “I spoke with Paula within a few months of my son’s diagnosis, and I was on the board of FAST the following year.”

The Chicago-based nonprofit organization is today the largest non-governmental funder of Angelman-specific research in the world, she said. It is run by both a board of directors and a scientific advisory board that includes Weeber and 16 other highly specialized medical professionals.

“For so many years, families were told there was no treatment potential for AS. ‘Cure’ was an ugly four-letter word,” she recalled. “But there’s been a huge shift in the last five years in the medical landscape, and today there are actually several therapeutic options we can look at and invest in.”

Last month, Agilis Biotherapeutics of Cambridge, Massachusetts, which develops innovate DNA treatments for rare diseases of the central nervous system, presented the latest results of its gene therapy program for AS at two recent international conferences. Another company, New York-based Ovid Therapeutics, is conducting two clinical trials assessing its lead candidate OV101 to treat adolescents and adults with Angelman.

Earlier this year, Roche teamed up with FAST and another group, the Angelman Syndrome Foundation, in the first phase of a study to support the design of human clinical trials and treatment development for AS.

But all that research costs big money, which is where Pinders and her fundraising skills come in. Her team has succeeded in building partnerships with companies such as Vivint, a home security system based in Utah. “They’ve become very strong allies of FAST and big supporters of our gala,” Pinders said of Vivint, adding that a year ago, the French family foundation that produces Grand Marnier liqueur — the Marnier-Lapostolle Foundation, which has a family member with AS — donated $5.8 million to FAST.

Meanwhile, media coverage of FAST’s annual gala has increased dramatically. Last year’s event was covered by ABC-TV’s Chicago affiliate, Channel 7, as well as by Deadline Hollywood, People magazine, and Splash, a Chicago Sun-Times publication.

For more information about the 2017 FAST Global Summit & Gala, please call (630) 852-FAST or send an email to [email protected]