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Breakthrough MS Quarterly Update

Winter 2019–2020


In this article

This Next Chapter Could be the Last for MS

"I’ve been living with MS for 30 years now ... where there used to be only hope, now there’s actual progress."

– Caroline

This has been an incredible year for the MS movement—you’ve helped us make so much possible. A Society-led study confirmed that nearly one million people are living with multiple sclerosis in the U.S., which is twice as many as had been previously reported. No one should have to face MS alone, which is why the National Multiple Sclerosis Society is committed to connecting to everyone with MS so they can live their best lives.

We’ve never been closer to a cure for MS and an understanding of how to prevent the disease and reverse its course.

Groundbreaking, life-changing solutions are a reality, and building on these will be made possible with continued global collaboration – and it’s only possible with you.
Attendees at the 2019 Society Leadership Conference
Attendees at the 2019 Society Leadership Conference
The recent Society Leadership Conference brought together volunteer and staff leaders from across the country to set the course for the year and build momentum.   Through inspirational sessions and networking opportunities, we uncovered new ways to increase the impact we’re making while celebrating how far we’ve come. We are more committed than ever to changing the world for everyone affected by MS.

Additionally, almost 100 research and clinical fellows came together for the Tykeson Fellows Conference which happens every other year in conjunction with our Leadership Conference. Bringing together both conferences provides early career researchers and budding MS specialists an opportunity to connect with those living with MS, passionate leaders in the MS Movement and funders of their research and training grants, and in turn provides other attendees a chance to learn about cutting-edge research happening right now by the next generation of MS researchers. It was exciting and inspiring for everyone to know that the researcher who will find the next big breakthrough in MS or the future MS specialists who will treat people with that breakthrough medicine may be right next them.
Tykeson Fellows Conference poster presentation
Tykeson Fellows Conference poster presentation

As we continue to connect as a community, we become grounded in the most important work ahead and the biggest challenges we must tackle. MS can be harsh and unfair. By working together, we have the power to achieve breakthroughs, uncover solutions, and create a world free from MS.
We’ve already made more discoveries for MS than the world has seen for any other neurological disease. Our first chapter marked the beginning of the MS movement, when 50 people united to do something about MS and within a year, funded the first significant MS research. This study began building our understanding of the disease, its progression, and its effects. Our second chapter changed the range of possibilities for people with MS, with a nationwide network of support and connections emerging and the first treatments making it possible to manage MS and maintain more function. Today, we know that the breakthroughs that will change lives and help end MS forever are on the horizon—and we can seize them together.
We have reached a profound new moment in the history of MS. We have the right priorities, partners, process, and track record to deliver the next generation of breakthroughs. The only question now, is how fast we can move. With your continued support, it is quite possible that the next chapter in our story could be the final chapter for MS.
I hope you end the year with as much excitement and optimism for the year to come as I have. Thank you for everything you do for everyone affected by MS – I look forward to the coming year and the many breakthroughs we’ll accomplish together.
Yours truly,
Cyndi Zagieboylo, President & CEO, National MS Society
Cyndi Zagieboylo
Cyndi Zagieboylo, President & CEO
National MS Society

Fueling the Next Generation of MS Researchers

Dr. Kirsten Evonuk

"After the Tykeson conference, I was so energized to get back to work to help people living with MS."

- Dr. Kirsten Evonuk, Fellow

This year’s Tykeson Fellows Conference brought together up and coming MS researchers and clinicians to inspire collaboration and better serve those who have MS. For Dr. Kirsten Evonuk, who is one ofSociety funded Kathleen C. Moore Fellows, the conference presented the perfect chance to make valuable connections and push her own research forward.
Not only was Dr. Evonuk an attendee at this year’s gathering, she also made the decision to serve on the planning committee for the conference—a role that offered a unique opportunity to meet new people early on in her fellowship.
“Connecting with other scientists helped me to shape and focus my own research,” says Dr. Evonuk. “And because it happened at the same time as the Leadership Conference, I also got to meet people who are affected by MS. This made me want to work harder to help them.”
A particular highlight for Dr. Evonuk, was having the chance to meet Greg Moore who leads the Kathleen C. Moore Foundation in honor of his late wife. “It was such a unique opportunity to meet a person who is so invested in my research.” Dr. Evonuk noted.  
The bi-annual, Society-led Tykeson Fellows Conference is recognized internationally among the scientific community for bringing together MS research fellows to share their latest research discoveries, learn from their peers, explore new partnerships, and gain insights on MS career development. This conference is a vital part of supporting the next generation of MS experts as they work to change the world for people with MS.

By attracting and investing in the best and brightest scientists through the National MS Society Fellowship Program, the Society fosters the development and productivity of young scientists who have potential to make significant contributions to MS research.

Attendees at the Tykeson Fellows Conference poster session

Attendees at the Tykeson Fellows Conference poster session
More than 1088 MS researchers have received critical training support from the National MS Society over the past decades, having driven exponential progress toward uncovering answers and deliver life-changing solutions to people with MS.  Dr. Evonuk’s research for example, focuses on looking for new ways to help people with progressive forms of MS. She hopes that her investigations will lead to new therapies that will protect brain cells from being damaged.  
“Being a fellow has given me the chance to pursue so many interesting avenues of research,” Dr. Evonuk said. “This could lead to a new understanding of how MS develops and how to use therapies to get rid of symptoms.”

Celebrating a Legacy of Generosity

Lifetime Giving by Hilton Family to the Society Has Surpassed $25 Million

"After working closely with the MS Society, we have reached a level of confidence that there is strong management and oversight"

- Steve Hilton, Chair of the Conrad N. Hilton Foundation
Growing up, Steve Hilton had the best mother anyone could ask for. She was high-energy, loving, encouraging, and enjoyed having lots of kids hanging out in their house. Steve reached adulthood with a collection of sweet memories in which his beloved mother played a central role.
When Steve was in his mid-30s, his mother Marilyn was diagnosed with MS and began a gradual decline in her health over many years.
Seeing his mom eventually need help walking, and then have to move into a wheelchair was tough for Steve and his family members. In spite of her change in mobility though, his mother managed to always have a very positive attitude—one of the qualities he admired about her most. 
Steve’s father—Barron Hilton—former CEO of Hilton Hotels Corporation and chairman emeritus of the Conrad N. Hilton Foundation saw firsthand how MS affected his wife, Marilyn. The family’s experience opened their hearts to every family affected by MS. He realized that his family was fortunate to have nursing care and helpers but sympathized with how difficult it must be for those families that don’t have the same type of financial means. It moved him, and the other members of the family, to want to help others by supporting the National MS Society.
The Hiltons' history of philanthropy began in 1944 when Steve’s grandfather Conrad Hilton started the Conrad N. Hilton Foundation. When Conrad passed away, he left his entire estate to the Foundation, with a beautiful mission mandate to support the most vulnerable people. The Foundation’s first gift to the National MS Society happened in 1957 and was for $250, before Marilyn was diagnosed with MS. Since that modest first gift, their contributions have grown exponentially.
Robert C. Collins, MD, Former Chairman of the UCLA Department of Neurology at UCLA (left) and Barron and Marilyn Hilton at the Marilyn Hilton MS Achievement Center
Robert C. Collins, MD, Former Chairman of the UCLA Department of Neurology at UCLA (left) and Barron and Marilyn Hilton at the Marilyn Hilton MS Achievement Center
In the last six decades, the family has supported the MS movement generously, through gifts from the Hilton Foundation, and recently, $27 million from Barron Hilton personally to the National MS Society in honor of his wife. Sadly, Barron passed away in September, but with a powerful, lasting legacy to the MS movement.  His generosity created the Marilyn Hilton MS Achievement Center at UCLA and is empowering people to live powerfully by providing them with education, connection and wellness opportunities, as well as the Marilyn Hilton MS Research Fund which invests in key research initiatives to move us closer to a cure.
“Many of the researchers that the Conrad N. Hilton Foundation has funded over the years have helped to create new therapies that do make a difference in the lives of people with MS,” Hilton said. “The gift that my dad recently made to create the Marilyn Hilton Achievement Center at UCLA, will also help those with MS, by giving them access to physical therapy, yoga, art therapy and other programs that will allow them to have a healthy lifestyle.”
As the current Chair of the Conrad Hilton Foundation, Steve hopes that someday researchers will be able to find a cure for most people with MS. His family’s contributions toward making this happen, have culminated in the largest single gift ever to the Society.
With Barron Hilton’s giving having surpassed $27 million, he was honored with the prestigious Founder’s Circle award at this year’s Society Leadership Conference. The Hilton family’s inspiring leadership has not only provided a fitting and heart-warming legacy for their matriarch Marilyn Hilton but has also greatly improved the lives of people with MS and helped to pave the path toward a cure.
Learn more about the Hilton family’s lasting legacy to the MS movement by watching this powerful video:


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