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June Halper: “It has to be accessible because a majority of our group cannot manage stairs”

In the case of a chronic disease like MS, I believe that empowering and educating patients is the most important thing we can do since it is their disease — they are the experts, and we are their consultants. Because of that, I also believe that leadership is not just a top-down, one-way street that is based […]

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In the case of a chronic disease like MS, I believe that empowering and educating patients is the most important thing we can do since it is their disease — they are the experts, and we are their consultants. Because of that, I also believe that leadership is not just a top-down, one-way street that is based on having a certain title.


As part of my series about the “Social Impact Heroes”, I had the pleasure of interviewing June Halper, a certified adult nurse practitioner who has specialized in multiple sclerosis since 1978. She was a founder of the MS Center in Teaneck, NJ, and was the Executive Director until 2008. Ms. Halper was president of the Consortium of Multiple Sclerosis Centers from 1995–1997 and has been the Executive Director since 1992. She is a member of the American Academy of Nurse Practitioners, the founding director of IOMSN, the International Organization of MS Nurses, and the recipient of the IOMSN’s first June Halper Award for Excellence in Nursing in Multiple Sclerosis. She was inducted as a Fellow into the American Academy of Nursing in November 1999. In 2000, she spearheaded the establishment of the Multiple Sclerosis International Credentialing Board, who developed the first international certification examination in multiple sclerosis nursing offered in June 2002 and bi-annually thereafter. As Executive Director of the CMSC, she initiated the first certification examination for multi-disciplinary MS specialists in 2004. In 2010, she oversaw CMSC’s approval by ACCME as a provider of continuing medical education for physicians. The CMSC is now a joint provider of CE for members of the multidisciplinary team. She is currently the CEO of the CMSC and the IOMSN.


Thank you so much for doing this with us, June! Can you tell us a story about what brought you to this specific career path?

I grew up in New York City, married quite young, had kids, and moved to the New Jersey suburbs during the era of Women’s Liberation in the 1970s. At that time, many women were trying to “find themselves,” and I was no exception. My husband was an internist, and my original plan was to become a Nurse Practitioner and then go into practice with him. I enrolled in local colleges and universities with that goal in mind. Unexpectedly, as part of my academic activities, I was assigned to a three-month rotation with a local chapter of the National Multiple Sclerosis Society. That assignment changed my life.

At that time, MS was a very misunderstood disease. It was often confused for muscular dystrophy. The only thing I knew about it came from one paragraph in a nursing textbook. The prevailing wisdom at that time was that there was nothing you could do if you had MS; it was labeled as “the crippler of young adults.”

But when I started working with patients who actually had MS, I realized there was so much more to this disease — and to the people who were working to live active and fulfilling lives without letting their disease define them — that I felt like I had found my calling to serve these people who needed specialized care, advocacy, help, and hope.

Can you share a story about the funniest mistake you made when you were first starting? Can you tell us what lesson you learned from that?

Remember when I said that MS was incredibly under-represented in medical training 40 years ago? One of the misconceptions I had was that everyone who had MS was in a wheelchair because that was publicized in special events to raise funds for research.

In order to educate myself and members of the NMSS, I organized a 10-week course for caregivers of people with MS. We met in a local Red Cross building. At that first meeting, many people walked in to register. I thought, ‘Oh, this is interesting. All their caregivers are coming to find out how they can help.’ So, when the session began, I asked, ‘Who in your family has MS?’ They all said, ‘I do.’ That was a complete light bulb moment for me. Up to that point, even with my nursing education, did not understand that people with MS could walk! I did not understand that MS presented itself and progressed differently. Publicity about the disease led me to believe that MS caused people to be confined to wheelchairs from the outset.

By the end of our ten weeks, this group of people with MS enjoyed their time together. They requested that I help them start and run a support group. They became my colleagues and my friends. Eventually, they formed a committee and raised about 600K dollars to open an MS center in northern New Jersey since at that time the only MS Center in the area was in New York City. That experience was eye-opening and educational for me. It taught me many important lessons about the importance of advocacy, collaboration, and team building.

Can you describe how you or your organization is making a significant social impact?

Right now, we are celebrating the International Year of the Nurse through the Nightingale Awards program, a collaboration with EMD Serono, the biopharmaceutical business of Merck KGaA, Darmstadt, Germany. The Nightingale Awards are creating significant impact through nurse-managed designed to improve the quality of life for MS patients all over the United States. Together with EMD Serono, we are celebrating how nurses light the way to health and wellness even in the face of chronic illness.

Additionally, I am incredibly grateful to have been involved in leading two amazing organizations that have been so instrumental in changing how the world sees MS: the Consortium of Multiple Sclerosis Centers (CMSC), and the International Organization of MS Nurses (IOMSN). Each of these organizations makes a tremendous impact in the care and education of people who have MS, as well as those who care for them, including the healthcare team and care partners.

I think the biggest impact these organizations have had is the advancement of the multidisciplinary approach, in which MS care if provided not just by physicians and nurses but also by mental health professionals, rehabilitation specialists, and other experts who all work together as a team. For this to happen, the medical community had to realize that MS was not just a neurological disease, but a “whole body, whole society” disease that requires more than one specialist to treat effectively. Since that shift happened, you’ve seen the same approach in muscular dystrophy, rheumatoid arthritis, lupus, and other chronic diseases. In my opinion, comprehensive care has been proven to make better sense in chronic illness.

Nursing professionals and PA’s (physician assistants) have emerged as key players in this model of care. They have regular contact with patients and the rest of the team. They are important liaisons in this effective model of care. They, and the other team members, take advantage of important opportunities to educate and support patients in their journey with MS. All members of the treatment team are viewed as being equal contributors to a patient’s overall health.

To me, the team approach, with much more family involvement throughout the course of the disease is no longer seen not through a lens of isolation but a lens of hope.

Can you tell us a story about a particular individual who was impacted or helped by your cause?

Oh, there have been so many… Connie is one who definitely stands out. I met her in 1980, and at that time walked using two crutches. Eventually, she ended up in a wheelchair but she did not give up without a fight. She kept exercising with and without physical therapy. Unfortunately, the disease won. Prior to developing MS she has been a teacher, highly respected and well-known in her community. Over time, as she adjusted to her advancing disability, she found her voice. She went on to become a leader in the disability community. She was involved in advocating for the ADA which is now celebrating it passage 30 years ago. She headed a patient committee which raised funds to open an MS center. She spearheaded the development of a volunteer corps for the center. She had a tremendous impact on so many people through her advocacy activities. I used to call her my Iron Butterfly. Even today, whenever I feel like I cannot do something, I think of Connie and I say, “If she could do it, I can do it.”

Are there three things the community/society/politicians can do to help you address the root of the problem you are trying to solve?

Three things that everyone could do to improve the lives of people with MS are actually surprisingly easy: listen, rethink, and refocus.

The following is an example. In November of 1980, I asked a local community college if they had space where we could invite a neurologist to come and speak about MS to a group of patients and their families. I said, “It has to be accessible because a majority of our group cannot manage stairs” No problem they said. You may use our auditorium. I was very pleased and excited about the opportunity. Well, when I arrived on the night of the meeting, I saw that the auditorium’s entrance was about 3000 feet away from the closest parking spot. That is when I realized that accessibility isn’t just about stairs; it is also about distance. I thought I had been thinking about obvious barriers, but it turns out I was not asking enough of the right questions.

So my advice is to listen to the people you are trying to help because no one knows their issues better than they do. I should have asked about barriers that challenged them. My second tip is to rethink what you think you know because there is always more than one side of a problem. If I had done so, I would have encouraged people with walking problems to use a wheelchair, cane, crutches. I would have rented some equipment for those with mobility issues. Plan ahead; walk the walk; get as clear a picture as possible.

How do you define “Leadership”? Can you explain what you mean or give an example?

To me, leadership means helping people work together in pursuit of a common goal. The late John Lewis is my ideal leader. He walked with his supporters; he listened and learned. Sometimes, that also means helping people learn how to advocate for themselves. Sometimes you may have to identify barriers yet encourage people to take the first step and assume control.

In the case of a chronic disease like MS, I believe that empowering and educating patients is the most important thing we can do since it is their disease — they are the experts, and we are their consultants. Because of that, I also believe that leadership is not just a top-down, one-way street that is based on having a certain title.

A few years ago, I met a man with MS who was so frustrated by his disease. He was embarrassed by his disability. Prior to becoming disabled, he was a busy professional who mentored a number of young people who entered his profession. I suggested he should consider becoming active in a mentorship program for new citizens at the local library. He did follow up but quickly found out that the library had limited parking for people with handicaps. He went before the town council and requested adequate parking which he obtained with the backing of council members as well as other members of the disability community. As a result, he mentored people with disabilities as well as new citizens because the library became accessible to all thanks to his efforts.

You are a person of enormous influence. If you could inspire a movement that would bring the most amount of good to the most amount of people, what would that be? You never know what your idea can trigger. 🙂

Pursuing a career in MS is all about falling in love with hope, and with the people who need it. Nurses particularly can be creative and very community-oriented.

This year, the IOMSN, supported by EMD Serono, awarded ten Nightingale Awards in honor of the 200th birthday of Florence Nightingale. Winners were MS nurses who live throughout the United States and who are developing innovative programs that have an impact on MS patients in their local communities. Some of this year’s winners are organizing dance therapy classes for people with MS, recumbent bicycle trips for MS patients and their caregivers, and helping people with MS identify workplace accommodations that can keep them remain gainfully employed despite their physical or focus limitations.

I find it incredibly hopeful that so many nurses are creating programs as part of their work but also during their leisure time. . So if I could inspire a movement of my own, it would be to motivate even more young people who are interested in entering the medical field to consider specializing in MS. There are so many opportunities to make people’s lives better. If I hadn’t developed that ten-week course in New Jersey 40 years ago, I might not have had the great opportunities to grow and develop personally and professionally. There is no telling what the next generation of people who are passionate about MS will achieve.

Can you please give us your favorite “Life Lesson Quote”? Can you share how that was relevant to you in your life?

Is there a person in the world, or in the US with whom you would like to have a private breakfast or lunch with, and why? He or she might just see this, especially if we tag them. 🙂

Same answer for both questions: Supreme Court Justice Ruth Bader Ginsburg. She once said, “Women will only have true equality when men share with them the responsibility of bringing up the next generation,” and she is right. In my case, “Women’s Lib” stood on the shoulders of a true partnership. My husband was the most amazing partner. He supported my decision to go back to school and helped raise our three kids while I was taking classes and eventually earning my Bachelor’s and Master’s degrees. I was only able to do all of that because I had someone to back me up; if he had not, I probably would not be where I am today.

How can our readers follow you on social media?

IOMSN:
Facebook — https://www.facebook.com/iamIOMSN/

Instagram — https://www.instagram.com/iamiomsn/

Twitter — https://twitter.com/iamiomsn

CMSC:

Facebook — https://www.facebook.com/CMSCmscare

LinkedIn — https://www.linkedin.com/company/cmsc/ 
Twitter — https://twitter.com/mscare/

YouTube — https://www.youtube.com/channel/UC3S9hHPUeR7H8pj2I7IfGIA

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