In this sequel to Bridging the Gap, we will learn about some of the misconceptions surrounding pediatric multiple sclerosis (MS) and the solutions that the Pediatric Multiple Sclerosis Alliance (PMSA) is offering to help children and families manage the challenges of living with MS. Let’s dive in and learn more from Jill Blackburn, the president of PMSA, a non-profit organization that is dedicated to improving the lives of children with MS. Jill has extensive experience in the field of pediatric MS and is passionate about providing support and resources to families affected by this condition. Let's get started!
Wande: What are some misconceptions people have about MS?
Jill: "I’d start with the first misconception I had. The first thing was - 'you’re going to be in a wheelchair, your life is over' - that is a huge misconception. The other one is just understanding that each person’s course through this disease is going to be totally different. For instance, we have one family in our group and both of their kids have MS. Their two children had completely different courses of MS, different levels of disability and ability. So, there is really no hard and fast rule."
I understand that some dreams can seem impossible due to the challenges one faces. But I always remind people that they can still achieve their dreams; it may just require a different approach. My daughter always wanted to be a teacher, but towards the end of high school, she started having trouble with word-finding. One day, she came to me and said, "Mom, I don't think I can be a teacher. I can't imagine standing in front of a class and trying to talk to my students while saying weird things like, 'Okay, everybody, get out your cars, it's time to work on our pencils now!'" My daughter is pretty stoic, but I could see the emotions welling up in her eyes, and it broke my heart. So, I thought quickly and said "You don't have to give up on your dream of being a teacher; you just have to find a different way to pursue it. With your adventurous and adorable personality of kids, you can be a kindergarten or high school teacher." At first, she laughed it off, but then she realized that I was right. "I guess you're right, Mom," she said. "I can still be a teacher, just in a different way." And that's the message we want to share with everyone - don't give up on your dreams, find a different approach to make them a reality.
Wande: Studies have shown that MS is more prevalent in certain populations but the reason for this is still unknown. How has PMSA played a role in MS research?
Jill: We have a family in our group whose daughter got diagnosed with MS at the age of 8. They migrated from Afghanistan to Sweden, and all their kids were born there. Our group has been having extensive discussions about how genetic and environmental factors impact MS disease. Research indicates that vitamin D plays a role in MS, and it's expected that countries with low sunlight exposure, such as Sweden and other Northern European countries, would have a higher prevalence of MS. However, not all such countries have a higher prevalence of MS, which raises questions for us. Scientists have recently announced a significant discovery about multiple sclerosis (MS). After more than two decades of suspicion, research has finally proven that the Epstein-Barr virus is a viral trigger for MS. With international travel and borders becoming more open between countries, it is possible that the Epstein-Barr virus is being transmitted more easily between countries. MS is truly multifactorial, and there are numerous possible explanations. We have some parents in our group who have twins. Interestingly in some cases, one twin has MS and the other doesn't. This indicates that MS is not entirely genetic. Our group is unique in that we have research organizations and drug companies that approach us to find participants for their studies. This access to information has been incredibly helpful. For instance, they may be looking for females between the ages of 12 and 16, mostly Latinos, African Americans, or Asians to evaluate if they have Epstein Barr virus, low vitamin D levels or if they have siblings with MS, or if autoimmune diseases run in the family. It's fantastic that PMSA is a part of many research studies.
We've learned from the pediatric MS neurologists participating in these studies that children, especially younger ones, are an ideal population for this type of research. They have fewer environmental triggers in their system than adults. For example, a 50-year-old female has had 50 years of environmental exposure to certain things, whereas a 5-year-old has had much less. Younger kids are highly sought after for research studies as they may reveal the environmental or genetic factors that cause this disease.
Wande: Can we then say PMSA is an advocate for children with MS?
Jill: Absolutely! Our motto is to support, connect, and advocate! We aim to advocate for children and their parents, provide support in terms of resources and emotional assistance, and connect families. Advocacy can be a massive element in this process. Currently, there is only one MS drug that has been approved for pediatric use – just one! Although my daughter was never on that one, we have seen parents struggle to get their children the medication they need. We therefore assist parents in fighting the battle when insurance companies deny their child’s medications because they are considered off-label for pediatric use. There are numerous ways in which we help advocate, such as in school districts that resist accommodating their children's school needs, or with social security when a parent applies for disability (SSA) for their child. We have knowledgeable parents who can offer advice to those who need it.
Moreover, drug companies have approached us for retrospective data. Many parents are reluctant to enroll their kids in a clinical drug trial involving a placebo because it may result in irreversible disease progression. However, they are more willing to participate in drug-to-drug trials. Hence, we can retrieve retrospective data to evaluate how a drug has worked in the pediatric population. For instance, Ocrevus has been administered to many kids with MS, including my daughter. The youngest child I know of who was placed on Ocrelizumab was 12 years old when she started, and I believe there are even younger children taking it now. The drug manufacturing company can go back and evaluate how the drug affected a child during their teenage years. This retrospective data can provide insight into the drug's efficacy and any potential side effects, allowing additional drugs to be approved through the FDA. Although some drugs are approved for pediatric use in other countries, there are still very few. Currently, our children are prescribed the same drugs that adults take for MS because there aren't many options available specifically for kids.
Wande: What are some of the biggest challenges PMSA has faced/is facing right now?
Jill: As a small home-grown organization, we often find it challenging to compete with the big establishments. Our biggest challenge is fundraising, which is crucial to enable PMSA to attend neurological organization meetings, update our website, and raise awareness about pediatric MS. Another major hurdle, especially on the international front, is the lack of support available to families in countries where resources are limited. Due to the low prevalence of pediatric MS in these regions, it's difficult to reach out to these families and small communities, making it more challenging to provide them with the necessary support and care. This creates a significant obstacle in obtaining the aid and assistance they require.
Wande: What are some of the most successful programs your organization has launched?
Jill: We don't claim anything on our own. Our efforts are always collaborative, usually with other MS organizations like the National MS Society, MS UK, and local MS chapters. We're currently working with some of these chapters to organize quarterly or yearly gatherings for families to socialize and learn. We'll invite speakers to discuss topics such as diet, medication, research, and how to navigate school systems. Overall, we work with many other organizations to create opportunities for families to collaborate. Our greatest achievement as an organization is being an online community that provides support and fosters connectivity. Our platform allows families from all over the world to connect with each other. For example, we connected a family in Northern England with another family in Michigan who has a daughter the same age. Though we live in the age of technology, a fine piece of mail in the mailbox still holds a special place in our hearts, especially for kids. These girls have become pen pals and great friends since. Well, this was like 6 years ago and the girls just love each other, if there was a way, we could somehow manage to get these two girls together it would be fabulous. We also connected a little boy in Spain with another boy in Southern California who has pediatric MS, and they became fast friends. This is something that we are immensely proud of, and it is at the core of PMSA. Our goal is to connect families and help them know they're not alone in this fight.
Wande: What are some of the resources or tools that helped you along your journey?
Jill: When my daughter was diagnosed with MS, I reached out to the National MS Society for help. However, at that time, their resources for pediatric MS were quite limited. All they could offer me was a package in the mail and suggested I attend a “Newly Diagnosed Seminar” in my local area. The package contained some informational materials and a binder, but they didn't offer much guidance on finding a doctor, managing my daughter's diet, or understanding the available drugs.
Over time, the MS community came together and demanded more from the National MS Society. This led to positive changes, including the appointment of a coordinator for special populations. I had the opportunity to work with her, and we are now listed as a resource on the National MS Society website. Additionally, the Society now hosts quarterly webinars and an annual Newly Diagnosed webinar, providing families with much more support and resources.
Wande: From a technological point of view, what do you think is needed to improve the present circumstances?
Jill: MRI is the gold standard for imaging MS, but there's no single test to determine the disease. MS is a rule-out disease, meaning that if everything else is ruled out and MS is what's left, then that's what a person has. However, getting a definitive diagnosis for children, even with MRI, can be more challenging because their brain lesions tend to be larger and less well-defined than those in adults. To diagnose MS in children, doctors have to rule out other possible conditions such as ADEM (acute disseminated encephalomyelitis) or a simple episode of optic neuritis. They also need to determine the location of the lesions, whether they're in the brain stem, optic nerve, or spine. So, there is a period of time that will elapse before a definitive diagnosis can be made.
With improvements in imaging technology, it will become easier to diagnose MS. For instance, OCT (optical coherence tomography) has made an impact. As new technologies are developed and confirmed as reliable sources of information, I think the boundaries for technology to aid in the diagnosis of MS are just unlimited. I know they are doing a lot with the higher Tesla magnets now and research studies are looking at both functional brain imaging and brain volume loss. MS is not just a disease of lesions affecting the myelin; it also shrinks the brain volume, which indicates disease progression over time. Apart from checking for new lesions, checking for brain atrophy is critical to understanding MS. As a result, research studies are looking into brain volume loss to gain a better understanding of MS.
Wande: As the President of PMSA what are some of the most important lessons you have learned? How do they guide your decisions and actions?
Jill: Don’t assume! Don’t assume anything!! I have been extremely fortunate in my interactions with both organizations and individuals, and I'm grateful not to have faced some of the challenges others have. Anyways, don’t assume that everyone has the same intent perhaps. Be cautious when using technology because it's easy to misinterpret messages, whether it's text or email. Having a verbal conversation with someone can never be replaced. Don’t assume that what I typed is precisely what I meant to convey. Don't assume. In all aspects of communication, avoid making assumptions, and always communicate clearly.
Wande: How do you balance your personal and professional life? How do you deal with stress and uncertainty?
Jill: (laughs) I’m not doing well at all (laughs). I still work a full-time job at the hospital which I love, and it takes up most of my time. PMSA is my second full-time job, and I’m equally passionate about it. Luckily, I have a lot of resources and help that I can draw from to keep me going. Whenever I feel a bit low, there’s something about PMSA that just gives me a new lease of life. It is invigorating and re-energizing, and I’m grateful for the opportunity.
Wande: What are some of the future goals and plans for your organization?
Jill: Our primary goal is to provide social interaction and educational opportunities for parents, and we will continue to do so. We recently had the pleasure of organizing a dinner and learning event along with the Denver MS chapter. This collaboration provided us with a fantastic venue and a knowledgeable speaker, a neurologist from the pediatric MS clinic at the Rocky Mountain MS Center. The event was open to families from the Greater Denver area, Colorado.
Our esteemed speaker discussed the latest research on diet and new medications, providing valuable insights and information. Although our plans were interrupted by COVID, we remained determined to make it happen, having worked towards this goal for the past 5-7 years. Overall, the dinner and learning event was a remarkable success and we were thrilled to see many families come together to learn, share their experiences, and support one another.
We also organized a smaller event in Australia where a group of families came together for an MS walk. It was amazing to see that one family traveled four hours to attend the MS walk despite the country's vast size. Our focus at PMSA is to provide support to parents, spread awareness and bring families together as a group, both nationally and internationally. We are committed to making this happen, and it is a never-ending journey.
Wande: How can people get involved with your organization?
Jill: Become a financial supporter. As parents, we encourage interaction and participation through the Facebook group. If we have social opportunities in your area, attend those. We encourage neurology residents, neurology researchers and other related professionals to collaborate with us. Especially those who are going to work in rural communities in the United States or other countries where there isn’t a large MS population so that we can provide resources for the families.
Wande: To wrap up this interview, is there anything else you’d like to share?
Jill: Evidently, this is something I am very passionate about. Even though my daughter is grown and has flown the nest, she is still my baby, and this mission is something I am extremely passionate about. Also, because we had such a rough start, I don’t want the parents of children who are being diagnosed now to go through that same rough start. My goal will be to make the transition as easy as possible and to show that you are not alone and there is support out there. One of the cool things about our Facebook group is that we have families who are awake at different hours of the day because we are all over the country. So, if someone jumps on there to ask a question or express a concern, somebody is always awake and somebody will always answer. You don’t have to wait Monday through Friday, 9 am – 5 pm! It is such a great opportunity to reach out or just a great way to connect with others.
I am looking back to your company and the opportunities that you might be able to provide for some of the families, especially in rural communities and even here in urban communities. I recall that it was going to take me weeks to get my daughter in for concern and that is the case for a lot of families. Imagine living in a rural farming community in Kansas and your kid comes home complaining about difficulty seeing or seeing black spots and you need immediate answers. What do you do? What an amazing opportunity it will be to get some real-time rapid information and for your company to be able to provide services like that. There is such an opportunity for advancement in the future. I know we are close to targeted therapy, and I am super excited about targeted therapies as more research goes on realizing that there are so many factors to MS. I welcome anything and everything with arms wide open!
Wande: I have enjoyed talking to you, Jill. Thank you for being so kind and generous in sharing your journey with us. Here’s to wishing you the best.
Jill: I appreciate the exposure. We all have to stick together; you are not alone.
Resources:
3. MS-UK