Earlier this year, Michele Dupree joined the ALS Therapy Development Institute (ALS TDI) as a Development Manager. This is only the latest way that she has dedicated her life to helping people with ALS – a deeply personal mission that stretches back over 15 years. At the upcoming ALS TDI Leadership weekend in Boston – including the ALS TDI Summit on October 14th and the White Coat Affair on the 15th – she will put that experience to use as a VIP Concierge for attendees with ALS.
The needs of people with ALS are at the heart of everything we do at ALS TDI, so it’s our highest priority to ensure they are able to attend both these events as safely and comfortably as possible. As the VIP Concierge, Michele will work throughout the weekend to help people with ALS in any way that she can – anything from tracking down an extension cord to providing an extra pair of hands to help settle into a hotel room, to whatever other needs may arise.
“I just know what it's like to travel with someone when they have ALS,” says Michele. “There's a lot of equipment, there's a lot of moving parts and pieces. Someone might not be able to leave their rooms or run down to the front desk to get something or across the street to CVS because they forgot something. If they pull up with their van and need to get out and need someone to park the van. I just want everyone to know that there's someone who’s there to help.”
Michele will be on hand to help at both the ALS TDI Summit research conference and the White Coat Affair gala. She will also be just a phone call, email, or text away at any other point over the weekend. Additionally, at the White Coat Affair, she will be managing a dedicated space for people with ALS – the Pat Quinn Lounge for People with ALS. The lounge will provide a quiet room for people with ALS and their caregivers to attend to their needs, or even just hang out for a moment away from the larger party in the ballroom. Attendees will be able to find her there throughout the evening to ask for anything they might need.
Michele’s Story
Despite the fact that she is a relatively new addition to the ALS TDI team, Michele will bring years of experience providing this kind of support for people with ALS. While she is not a nurse or home health aide, she’s spent more than a decade serving as a volunteer advocate.
“15 years ago, my friend Pam was diagnosed with ALS,” she says. “This is what introduced me to the disease and all of the needs that people have. Spending so much time with her, trying to help make her more comfortable, taught me how to develop a protocol of care so that we knew exactly what she needed on a day-to-day basis.”
In particular, Michele worked hard to make sure her friend had the assistive technology she needed to help her stay as independent as possible – a mission that led to her connecting with many other people with ALS. She learned about how everyone with ALS has unique needs, and the challenges of making sure those needs are met. She began forging friendships with others living with the disease, as well as volunteering for a local organization near her hometown on the New Jersey shore. Even after Pam passed away, she remained dedicated to helping others with the disease in her memory.
“I started becoming so well versed in what was happening,” she remembers. I would hear about different people that could use a little help, and I would just drive there. Once, I heard about someone through Facebook in upstate New York who was in a hospital that didn't have a wheelchair. I just got in my car and drove to Poughkeepsie and was able to get her a wheelchair and get her out of there. I just became really passionate about helping the people that didn't have the resources or family or an organization to help them. People sometimes called me the ALS problem solver.”
Joining ALS TDI
After so many years as a volunteer helping with people’s day-to-day needs, Michele decided to pursue an opportunity to join the team ALS TDI, taking on a new role in supporting research to end ALS. This pivot was inspired by another tragic event – the passing of Pam’s young son from the same disease that had affected his mother.
“Pam was unaware that she carried a gene for familial ALS” she says. “And after she passed away, five years later, her 20-year-old son was diagnosed and passed away one year later. That kind of sent me into a tailspin, realizing that time was not on our side and I needed to take a more aggressive role in trying to find a solution to help end ALS.”
In addition to her new role helping raise awareness about the importance of research at ALS TDI, Michele remains as dedicated as ever to helping support the day-to-day needs of people with ALS. She says that, after attending the White Coat Affair and ALS TDI Summit many times as an attendee, she is excited to put her experience to work meeting the needs of the important guests at both events.
“We're making every effort to make it as easy and as comfortable for people with ALS and their caregivers to attend these events,” she says. “We’re including specialty foods for them. We’ll have larger straws to drink out of if they're able to drink. We’ll make sure to have proper electrical outlets nearby so that they can plug in any equipment. And if you have any worries, reach out to us, we have people here to help.”
If you or a loved one are planning to attend any of the ALS TDI leadership weekend events and have any questions, you can reach Michele by email at mdupree@als.net or at (732) 693-5287.
What to do next:
