It is hard to believe, but the ALS Therapy Development Institute’s (ALS TDI) last in-person White Coat Affair was nearly three years ago. The last time the ALS TDI community came together to celebrate those living with ALS, honor those we’ve lost, and hear about the latest research to end the disease at ALS TDI was in 2019. Since then, the beloved annual tradition has been disrupted by the COVID-19 pandemic – it was held as a virtual gala in 2020 and then canceled in 2021 to protect the health and safety of our community.
However, on October 15th, 2022, the White Coat Affair will finally welcome back both longtime supporters and first timers to a live event in Boston For those who have never been, the White Coat Affair is an annual gala that celebrates the ALS community and the progress of ALS research, while raising crucial funds for research at ALS TDI. It features a program of moving speeches from people in the ALS community and updates on the latest science from ALS TDI researchers, as well as music, drinks, dinner, and dancing.
Like many other longtime attendees, Julie Gann is already excited to return home to ALS TDI’s signature gala. She says that, over the past two years, she’s deeply missed the connection with others who can relate to her experience of losing a family member to ALS.
“Being in a room with people who understand what you’ve been through,” she says, “it’s a feeling of community that’s hard to replicate in a virtual environment.”
Julie first became a part of the ALS community when her mother Joyce Edelstein was diagnosed with ALS more than 20 years ago. Joyce’s progression was fast – she was on a feeding tube and ventilator within a year of her diagnosis, and was unable to communicate for the last 6 years of her life. Despite this, she lived longer than most with the disease, passing away in 2011 at the age of 61, nearly 10 years after her diagnosis.
After watching her mother go through this, Julie was determined to find a way to contribute to the fight against ALS. However, the commitments of her full-time job and young family meant she didn’t have a lot of spare time to volunteer or participate in many fundraisers. When she discovered ALS TDI and the White Coat Affair, she believed she had found a way to maximize her impact by supporting research to find treatments for the disease.
“When [my mother] passed, I wanted to get involved in some small way,” Julie remembers. “It's very hard to do much when you're working full time and you have two kids that need you. But this was my way to help, contributing to ALS TDI and joining the event committee for the White Coat Affair.”
Since 2014, Julie and her family have been key supporters of the White Coat Affair. In addition to her fundraising work and role on the event committee, her husband’s business, Joseph Gann Jewelers, is a longtime event sponsor. They’ve also worked hard to introduce others to the event – even those without a personal connection to ALS – to help spread awareness about the disease.
Throughout the years they have been involved with ALS TDI and the White Coat Affair, Julie says her favorite memories are of the speeches given by people living with ALS at the gala. She believes it is these stories that truly give the event its power – reminding those in the community why ending ALS is so essential, and inspiring newcomers to join the fight.
“The best part about the event besides coming together with the ALS community with a shared goal of ending ALS,” she says, “is hearing people with ALS speak and give a voice to the reality that is ALS. If you need more inspiration to give to ALS TDI, the speeches given at the White Coat Affair will give you that in spades!”
“The speeches given by Osiel Mendoza, Sarah Coglianese, and Anthony Carbajal, three of the Young Faces of ALS, are the ones I remember most,” she adds. “They were all so brave, personable, and resilient and their speeches kept everyone in the room fully engaged from start to end and even laughing at times. I remember being so impressed with their poise, humor, and confidence up on stage in front of hundreds of people.”
In 2022, Julie says she can’t wait to finally be inspired by stories like these again at the White Coat Affair – while raising critical funds to support ALS TDI’s research to end ALS.
“I'm looking forward to just being there with the community,” she says. “It’s so important to let people tell their stories. I mean, it's very emotional, but it's so important to share them, and in-person is the best way to do it.”
To learn more about ALS TDI’s 2022 White Coat Affair, visit www.als.net/wca.
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