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Living with MS: Sometimes One Really is the Loneliest Number

eSupport Health featured in Momentum Magazine

Founders’ Corner

eSupport Health - Founders' Corner

Our vision for eSupport Health is to create a community for people with MS – all people with MS – to share, support, and feel supported by others who understand. In 2020, we secured funding support from the National MS Society to bring eSupport to folks who may face an extra challenge in finding resources. With the society’s backing, we’re running a trial to deliver eSupport to people from historically underserved and underrepresented groups – Black and Brown people living with MS. We started enrolling for the trial in August and our recruitment effort was entirely grassroots (read: tiny budget) – we reached out to MS influencers, MS neurologists at centers across the country, the incredibly welcoming folks at the newly formed National African Americans with MS Registry, and of course, our friends at the MS Society. We talked to EJ Levy at MS Hope for a Cure (of Big October fame), we talked to Jon Strum, we talked to Mitzi Joi Williams, we talked to Damian Washington. We talked and talked. And people started to come. And then people REALLY started to come. Our target for enrollment was 80; by January we had 240 people on deck! We are so happy and excited that so many folks found their way to us and want to be a part of what we are doing, but at the same time, we are frustrated that we aren’t set up to accept them all into the trial. Meaning: we don’t have enough funds to cover all the folks who need support. Together with our CEO Joe Duncan, we continue to look for options so that we don’t have to turn anyone away.

In the meantime, the response from folks who are currently taking part in the trial has been overwhelming. One participant was blown away to find someone in his group from Jamaica – he has never met someone else from Jamaica with MS. One woman told us that of all the treatments she has ever gotten for her MS, this was by far the ‘most impactful.’ One participant said that the idea of groups for Black and Brown folks was intriguing when she signed up, but actually experiencing it was something she didn’t expect – a level of comfort being with other folks who really got her experience. Again and again, we heard about how unbelievably skilled our coach Amanda Speights is, what a difference it makes to have a professional in the room, and how it really makes a difference that she is also a person of color.

As always and once again, all of you continue to surprise me with the things I learn from listening to your experiences. Thank you for joining us in creating a world that is a little bit better, a life that is a little bit more livable, and a journey that we don’t have to take alone.

Sincerely,

Dr. Vicky Leavitt

Stay In Touch

It’s time to talk about disclosure and concealment in MS

An article in Science Direct from Dr. Victoria Leavitt:
Deciding when and if to disclose a diagnosis of multiple sclerosis (MS) is complicated and highly stressful for individuals who are already facing many challenges. To date, few research studies have explored specific ways in which this challenge affects people with MS. From a cognitive neuroscience standpoint, the brain is a limited capacity system whereby any allocation of resources has a consequence for overall brain efficiency. To better understand the consequences of allocating resources to concealment behaviors and disclosure decisions, we developed a measurement tool, the DISCO-MS. Here, we discuss insights gained from follow-up focus group discussions with MS patients.

eSupport Health Named Valuable Resource by National MS Society

eSupport Health is pleased to announce that the organization has been formally identified as a valuable referral resource for people living with MS by the National MS Society. 

As part of this exciting milestone, eSupport has been added to the Society’s Nationwide Service Provider list.  Accessed by the team of MS Navigators, this is a list of reputable, vetted national resources offering services to the MS community. eSupport Health has also been added to the valuable Find Support page of the National MS Society’s website

This exciting announcement comes on the heels of eSupport Health announcing funding from the National Multiple Sclerosis Society as the capstone to its pre-seed raise in April. The funds are currently being used to build clinical trial infrastructure and to run a clinical trial of professional eSupport groups, called the CONNECT study, with a focus on underserved people living with MS. If you’d like to learn more about the trial, please visit https://esupporthealth.com/CONNECTStudy/

eSupport is grateful to the National MS Society for their continued support and partnership.