← RealTalk MS
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- [00:01]
A
I'm john strum and this is real talk, mississippi. It's March 24th and we have a lot to talk about. This week I'm in Washington, D.C. attending the National Ms. Society's Public Policy Conference and today is is Hill Day when I'll be joined by 175 Ms. Activists talking with our congressional representatives about the legislative issues that are most important to people affected by MS, including funding the Ms. Research program in 2027 and supporting access to affordable health care. You can expect to hear more about the Public Policy Conference and you'll meet some of the Ms. Activists who are here in Washington, D.C. in next week's episode of Real Talk Ms. But this week is all about walk Ms. And joining me to introduce us to the Many Sisters Walk Ms. Team is Team Captain Bridget Delaney. But before we get to my conversation with Bridget, there are a few other things that you should know about. We've often discussed the mounting evidence that shows that diet can impact Ms. Last month at the Actrooms forum, we had a chance to talk with Dr. Ilana Kat sand about the benefits of the MIND diet for people living with Ms. As a quick refresher, MIND is an acronym for Mediterranean Dash Intervention for Neurodegenerative Delay. And if ever a phrase was in need of an acronym, that may be the one. The MIND Diet combines elements of the Mediterranean and blood pressure lowering DASH diets. It supports the regular consumption of green leafy vegetables, other vegetables, berries, nuts, whole grains, olive oil, poultry, fish and beans, and limited consumption of butter and margarine, cheese, red meat, pastries, sweets and fried fast foods, along with moderate wine intake. Last week, study results were published that showed a positive correlation between adherence to the MIND Diet and and brain aging. I think it's important to point out that this study did not focus on people living with ms, but I also think the results speak for themselves and they're worth discussing. When we talk about brain aging, we're talking about the loss of gray matter in the brain. And it's been shown that the brains of people with Ms. Age faster than people who aren't living with Ms. So the results of this study indicate that adopting and sticking with the MIND Diet could be particularly helpful in slowing that loss of gray matter for people living with Ms. The study analyzed data from 1647 adults in the Framingham Heart Study offspring cohort. These study participants were assessed with three food frequency questionnaires and two or three brain MRIs between 1999 and 2019. Participants had a mean age of 60.9 years and 54.3% were women. Mind diet scores were calculated from the food questionnaire data and the median MIND Diet score was 6.8 out of 15. People with higher scores tended to be college educated women who were less likely to smoke or have obesity, diabetes, high blood pressure or cardiovascular disease. Because the study was observational and food intake was self reported, additional research needs to be done here before any final conclusions can be arrived at. And the study results themselves are based on a sample of primarily white middle aged and older adults, so it's yet to be determined whether these results apply to other populations. Because the MIND diet has already been shown to be beneficial to the health and well being of people living with ms, it certainly wouldn't hurt to give some consideration to this diet. And if it happens to slow brain aging and preserve more gray matter in the brains of people living with ms, well that's all the better. If you'd like to review the details of this study, you'll find that link in today's show. Notes. Last week the FDA granted a Regenerative Medicine Advanced Therapy designation for Neurogenesis Bios remyelinating cell therapy NGO1. Now, this designation is based on promising phase 2 clinical data demonstrating NGO1's potential to reduce disability, improve function and decrease disease biomarkers in patients with secondary progressive Ms. This special designation was established under the 21st Century Cures act and it serves to expedite the development and review of promising regenerative medicine therapies targeting serious or life threatening conditions with unmet medical needs. Having been awarded this designation means that Neurogenesis Bio, the firm behind NGO One, will gain access to intensive FDA guidance. Their Phase three clinical trial will be eligible for priority review and even accelerated approval based on intermediate endpoints. All of which means that the development cycle for this therapy has just been accelerated. So what is NGO one? Well, it's a remyelinating autologous cell therapy that's administered directly into the cerebrospinal fluid. It bypasses the blood brain barrier and finds its way directly to brain lesions. And while other DMTs focus on broad immune suppression, NGO One deploys a mechanism that secretes neurotrophic factors, specifically at sites of nerve damage, to reduce inflammation and promote active myelin repair. The phase 2 clinical trial involved 48 participants with secondary progressive Ms. When compared to a placebo. The trial results showed a clinically meaningful reduction in EDSS score, including improved walking speed in the 25 foot timed walk and improved fine motor skills measured by the nine hole PEG test. The trial Results also showed a reduction in Ms. Related biomarkers with reduced levels of neurofilament, light chain and gfap. For those of you interested in all the details, this is an encouraging step in the development of a treatment that's designed to repair myelin and restore function that's been lost to Ms. We'll keep you updated as this important work moves forward. A few weeks ago, I mentioned the that over 40 million people a day were asking chat GPT health related questions. While tech companies have taken notice of that remarkable statistic, we've seen specialized AI chatbots launched, including ChatGPT Health and Claude for Healthcare. Last week, Microsoft entered the AI health chatbot arena with the launch of Co Pilot Health. Co Pilot Health will function as a separate, secure space within Microsoft's existing Co Pilot Chatbot. It will draw from an individual's shared health records, their history, and any wearable data to deliver personalized insights. And Microsoft has gone out of its way to remind us that Copilot Health isn't a replacement for your doctor. They see Copilot Health as a tool that will enable patients to arrive at appointments with their doctor better prepared with the right questions, the right context, and the confidence that comes from better understanding their own health status. Although two hundred and thirty physicians were actively involved in developing Copilot Health, clinicians seem split on how they see the popularity of these new AI tools. On the one hand, everyone seems to agree that giving patients the opportunity to become more knowledgeable about their own health condition is a good thing. The downside, of course, is that chatbots can sometimes be wrong, and a wrong answer at the wrong time can lead someone into all kinds of unnecessary anxiety. Recently, a Washington Post reporter uploaded a decade's worth of health and fitness data from his Apple Watch and received an F in cardiac health from an AI chatbot. Now, the reporter's doctor analyzed that same data and indicated that the chatbot's assessment could not have been further from the truth. So as you look to AI chatbots for answers to your healthcare related questions, don't forget to apply your own real intelligence in evaluating their responses. The great majority of people with Ms. Are diagnosed before their 40th birthday, but as it becomes easier to get an accurate Ms. Diagnosis, people are being diagnosed with Ms. Later in life. When Ms. Symptoms begin after the age of 50, it's considered late onset Ms. And when those symptoms start after the age of 60, it's considered very late onset Ms. And researchers are learning that late onset Ms. Behaves a little bit differently. A Research team in Tunisia analyzed data from more than 81,000 people enrolled in the International Ms. Base Registry. They grouped these participants by the ages when their Ms. Symptoms began and it turns out that 5.4 of these study participants, or about 4,387, had late onset Ms. And 1%, or just over 800 participants, had very late onset Ms. As they focused more closely on the people with late onset and very late onset ms, the research team discovered that their level of disability was greater than the adults living with Ms. Who had been diagnosed by the age of 40. The researchers found that 21.7% of those people with late onset Ms. And 24% of those with very late onset Ms. Had been diagnosed with primary progressive Ms. And that compares to just 3.8% of the people who had been diagnosed before the age of 40. And while relapse rates declined with age, people with late onset Ms. Had a 39 to 80% higher risk of experiencing confirmed disability worsening. And for those people with late onset Ms. Who had been diagnosed with relapsing remitting ms, well, they were much more likely to develop secondary progressive Ms. As the Ms. Population ages, there's been a focus on better understanding what it means to age with Ms. This study provides ample evidence of the need for more research on what it means to develop Ms. At a later stage of life. The disease course seems to be less forgiving and more intense, so understanding what the best interventions are becomes more important than ever. If you'd like to review the details of this study, you'll find that link in today's show Notes. Whether it's identifying the best diet for someone living with Ms. Or creating the right treatment plan for someone over the age of 50 who's newly diagnosed, the search for evidence based answers requires research and the National Ms. Society is the largest private funder of Ms. Research in the world, having already invested more than a billion dollars in Ms. Research. That's why events like Walk Ms. Are so important. That's where life changing research gets funded. So as you listen to my conversation with Bridget Delaney, the captain of the Many Sisters Walk team, I hope you'll also visit realtalkms.com walkms and support me and support all of the advances in Ms. Research that are going to be made possible through your donation, in a moment you'll meet my guest, Bridget Delaney. It's walk season and Walk Ms. Comes to Los Angeles, where I Live on March 29 this year. The Many Sisters Walk team is joining us in la. And joining me today is the Captain of that team, Bridget Delaney. Welcome to the podcast, Bridget.
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B
Thank you, John. Happy to be with you.
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A
And as I just mentioned, you're the captain of your walk team. Every captain has a. Why? What was it that turned you into a team leader? Why do you participate in Walk ms?
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B
I participate in Walk Ms. Because I'm able to walk. And I'm really grateful for that. I have had Ms. For 23, going on 24 years, and I feel really lucky to have had a relatively easy course with this disease compared to many around me in the community. So I was living outside of the Chicago area when I was diagnosed. I was 37 and I joined the Highland Park, Illinois Walk. I thought, I gotta get part of this community to learn what's happening. And two dear friends walked with me and then we met, moved for job purposes the next year. And these two wonderful women committed to walking with me somewhere different every year. So Walk LA will be our 23rd consecutive walk. We join from all over the country. We're as few as seven and as many as 20, and usually representing between five and seven states. And we raise funds in our own home communities and we donate them to the chapter that we walk in.
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A
Many Sisters is an interesting team name. Is there a story behind it?
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B
There is. It was sort of a happenstance in that when I went to formally register our team way back when, I thought, what shall I call us? And then it struck me that these wonderful group of women, some real sisters, some sisters in law, and some friends who've become sisters, have flipped the script for me. The M and S now stand for a sisterhood that's become really, really special to me and flipped the overall feeling of living with a chronic disease to something that I look forward to energizing a group to raise some funds, show support for the community, and enjoy a lot of laughs and a really, really beautiful sisterhood.
- [15:16]
A
And you said this is your 23rd walk that your team is doing?
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B
Yes, 23rd. We've walked somewhere different every year. So we've had the most fun meeting folks along the way in each of these communities. And it's just been a wonderful way to explore the country, make new friends and support the community.
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A
How have you seen your team grow from that first walk to the group heading to the Rose bowl later this month?
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B
Well, we've really all grown together in that we've been through other diseases, we've been through divorces, we've supported each other in many ways. And along the way, it struck me as I read some articles about, about young Women and young men also getting this disease much younger than I did. So it inspired me to connect with the walk leader in that next walk, which was Chicago at the time, and ask whether she knew of a teenage young lady living with Ms. Who might be interested in some support from us. And so she did introduce us to our first little sister. And we walked with her, met her family, and we now have four little sisters that we've adopted along the way, and we continue to support them, be it job networking across the country to. We recently helped one who's really struggling purchase a wheelchair. They are in our hearts and minds with us all the time, especially on walk days.
- [16:46]
A
You aren't a Los Angeleno. In fact, as we've been talking, your team isn't from California specifically. So what motivated you to head west this year?
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B
Well, we were in Nashville last year and the year before that we were in Boston. So it was time to come west again, where three of our sisters live, one of whom is about to be a grandmother for the first time. So we want to keep her nearby in case that baby comes early. And we're also ready for some sunshine. We still have snow on the ground here in Princeton, New Jersey, and we are ready for some sunny California vibes.
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A
When it comes to fundraising, your name is a fixture on the national leaderboard. What's your secret sauce for reaching out to donors and keeping them engaged year after year?
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B
My approach to fundraising is community building events that also tap into Ms. I don't feel comfortable asking outright for funding. My current big fundraiser is an annual wreath workshop around the holiday time. This last year, it started with a dozen wreaths where I get natural wreaths. I collect all of the things to decorate them with. I forage everywhere in the woods and collect all of the acorns and pine cones. And we've grown to 92 wreaths this last year and we raised $11,300. So that's been my most recent fundraiser. But we've tried a bit of everything
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A
across the country, you know, beyond raising money. You have a team to think about. How do you go about recruiting new members?
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B
We ask each other who lives where we're going this year, who's got a babysitter, who lives there, who's got a, you know, who's got a sister, a cousin, who do we know? Let's invite them to come join the fun. And we bring a whole lot of extra of our team swag and we try to get them in on the fun. It's really, it's a Joyful. It's a joyful day and people often ask, you know, how far is the walk? And I say it's really not a challenge walk, it's community. There are many people, of course, who aren't able to walk and that's why we're doing it, to support that group and make them feel loved and honored. So it's a joyful experience. I think all of our new members come away feeling like they've really been part of something special and that's a great thing.
- [18:57]
A
What would you say to someone who wants to be a part of it, who wants to help? But you know, and I hear this every so often, they're afraid to ask for donations. What would you say to them?
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B
Well, one of the reasons that I considered, or not really the reason, but one of the happy silver linings to adopting our little sisters is that it takes the focus off me when I'm asking for fundraising. It's. It's sort of tough sometimes when you are the one with Ms. Making the ask. It can just be a bit uncomfortable for me. So I encourage people to find a way to connect with your community and maybe it's not about ms, maybe it's a book group. Do something that you love to do, bring people in to share that joy with you and while you're at it, have a conversation about Ms. You know, everyone's engaged. That is again why I prefer to do the community building events that tap into Ms. As well, so that someone walks away having had a great experience that was connected to the Ms. Community.
- [20:04]
A
When you look at the progress that's been made since you started walking, what gives you the most hope that we're nearing the finish line for ending ms?
- [20:14]
B
There's lots to be hopeful about. John I used to tell our little sisters that I know going to cure this thing in your lifetime, but I think we're going to cure it in my lifetime. I'm 61 years old and I'm very optimistic. I've been a trustee on the New Jersey Metro board of the National Ms. Society for the last two years and have had the opportunity to learn even more about what's happening as supported by the Society, all of the research funding and hiring fellows that then commit their careers to research and service to the community. Things like the recent international conference where more than 200 countries committed to sharing medical research, which is quite rare even to AI being applied to studies of massive amounts of MRIs that we can really analyze and get some data from. So there's lots to be hopeful for even the medication has come so far since I started. The diagnosing has come a long way. So, yeah, there's lots to be, lots to be optimistic about.
- [21:21]
A
I'm sure there's someone listening to our conversation who's never participated in Walk Ms. Before. What would you say to them that might get them to register for the Walk Ms. Event in their community?
- [21:34]
B
I would say come out and enjoy a special experience. Talk to people. When we walk, we sort of split up as a team and we read each other's silly shirts and we engage. And as I said before, there's a lot of joy and a lot of hope and I think people will come away feeling fulfilled in that. It's a really good thing to participate in. We really appreciate all the walkers coming out to support us. And so for your listeners who are in la, please look for the Many Sisters crew. Come say hello.
- [22:05]
A
Bridget Delaney, I want to thank you and the Many Sisters crew for walking the talk when it comes to raising funds that push us closer to a world where we're going to be talking about Ms. In the past tense. And thanks so much for talking with me today.
- [22:20]
B
Thank you, John.
- [22:22]
A
That's going to wrap up this episode of Real Talk Ms. Real Talk Ms. Is powered by the National Ms. Society and you can share this episode of the podcast by letting your friends or family members know that all they have to do is point their web browser browser@realtalkms.com 447. You'll find that link in today's show notes so you can easily copy and paste it right into an email or a text. And I hope you'll plan on joining me next week when you'll hear more from the National Ms. Society's Public Policy Conference and you'll meet some of the amazing Ms. Activists who are here with me in Washington, D.C. as we prepare to remind our elected officials that access to affordable health care and support for Ms. Research still very much matter. I'm John Strum. Thanks for listening. Stay safe and make healthy choices.
- [23:28]
B
It.