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Ambassadors Ball Honors Diplomatic Corps, Takes Stock of MS Progress

By Hannah Vandegrift

Multiple sclerosis affects over 2.5 million people worldwide, including 1 million across the U.S. and more than 20,000 in our region. Those staggering figures don’t include the inestimable numbers of loved ones and caregivers of those with MS who are also affected by their struggle.

On Sept. 10, the 41st annual Ambassadors Ball to benefit the National Multiple Sclerosis Society welcomed diplomats from all over the world to raise awareness and funding for MS research. Italian Ambassador Armando Varricchio and his wife Micaela served as the diplomatic co-chairs of this year’s Ambassadors Ball, which was held at The Anthem. In addition, Secretary of State Mike Pompeo and Sen. Tom Udall (D-N.M.) came out to support their wives, Susan Pompeo and Jill Cooper Udall, who served as co-chairs of the ball, which for over 40 years has paid tribute to the city’s diplomatic corps and their humanitarian endeavors.

Tom Udall, Jill Cooper Udall, Ambassador of Italy Armando Varricchio, Micaela Varricchio, President of the National MS Society Greater DC-Maryland Chapter Chartese Berry, Susan Pompeo, Secretary of State Mike Pompeo
Sen. Tom Udall (D-N.M.); Jill Cooper Udall; Ambassador of Italy Armando Varricchio; Micaela Varricchio; President of the National MS Society Greater DC-Maryland Chapter Chartese Berry; Susan Pompeo; and Secretary of State Mike Pompeo toast on stage. Photo: Tony Powell

The event has raised over $21 million in support of the National MS Society over the last four decades. In addition to diplomats, the Ambassadors Ball welcomes members of Congress, captains of industry and philanthropic leaders to kick off the fall social season.

“We are proud to be here tonight, to make sure the people living with MS receive vital programs and services, to live their best lives,” said event co-chair Cooper Udall. “The funds raised tonight will make a difference to families across the country, in cutting-edge research, to find treatments and ultimately a cure. It will help a society’s advocacy for greater healthcare access and help provide programs and services right here in the D.C. area for over 20,000 people connected to the society so far.”

President of the National MS Society Greater DC-Maryland Chapter Chartese Berry, Senator Rick Scott, Candace Carson, Secretary of Housing and Urban Development Ben Carson
President of the National MS Society Greater DC-Maryland Chapter Chartese Berry; Sen. Rick Scott (R-Fla.); Candace Carson; and Secretary of Housing and Urban Development Ben Carson. Photo: Tony Powell

“It’s truly an honor to be a part of the larger national MS society, whose mission is to end MS forever for the millions of people in the world … who live with the challenges of multiple sclerosis,” said Chartese Berry, the president of the National MS Society Greater DC-Maryland Chapter. “People with MS need a voice on Capitol Hill, and they need to be connected to the people, the information and resources that will enable them to move forward in their MS journey. The work of the National MS Society is comprehensive and broad, with a very daunting charge focused on three areas of work: driving research breakthroughs, advocating state and federal leverage, and delivering life-changing programs and services to educate, equip and empower the multiple sclerosis community and their healthcare providers and caregivers.”

MS is a debilitating disease of the brain and spinal cord that can occur at random and progress slowly or quickly depending on the individual’s severity. For those with MS, the immune system attacks itself, resulting in a variety of symptoms ranging from vision issues, balance problems, muscle weakness and, in the case of progressive MS, a complete loss of mobility and ability to function without assistance.

Dr. Ivonn Szeverényi, Danara Kazykhanova, Dr. Lubka Stoytcheva
Dr. Ivonn Szeverényi, wife of the Hungarian ambassador; Danara Kazykhanova, wife of the Kazakh ambassador; and Dr. Lubka Stoytcheva, wife of the Bulgarian ambassador. Photo: Tony Powell

For Jon Strum, the host of the “RealTalk MS” podcast, progressive MS is an issue he is intimately connected to, as his wife Jeanne was diagnosed with the disease in 1997. For the last 14 years, she has been a bedbound quadriplegic because of progressive MS.

“In deciding what I’m going to talk about this evening, it occurred to me that people living with advanced stages of progressive MS may never have the opportunity to stand up here and talk to you,” said Strum. “But if we could give everybody already diagnosed with progressive MS just five minutes each to share their stories with you, and tell you what it’s like to have progressive MS intrude upon their lives, and take their loved ones down a path no one ever volunteered to travel … well, we’d all be in this room for the next nine and a half years. So I have a lot of ground to cover,” he said.

Yoko Sugiyama, Ambassador of Japan Shinsuke J Sugiyama
Yoko Sugiyama and Ambassador of Japan Shinsuke J. Sugiyama, last year’s diplomatic co-chairs, greet guests. Photo: Tony Powell

“One day in 1997, when I was having coffee with my wife Jeanne, I noticed a faint tremor in her pinkie finger,” Strum recalled. “When I asked her about it, she looked at her little finger and shrugged and said, ‘I should probably have it looked at.’ And in less than 90 days, that tiny finger tremor led to a diagnosis of progressive MS.”

Strum had been a caretaker for his wife, Jeanne, for over a decade. He is also a non-science member of the International Progressive MS Alliance Scientific Steering Committee. Ever since his wife’s diagnosis, he strives to give her the best life she can achieve despite what the disease has robbed her of.

Representative Mark Meadows, Debbie Meadows, Nahla Reda, Ambassador of Egypt Yasser Reda
Rep. Mark Meadows (R-N.C.), Debbie Meadows, Nahla Reda and Ambassador of Egypt Yasser Reda. Photo: Tony Powell

“At the time of her diagnosis, Jeanne was in the midst of a successful career as a screenwriter in Los Angeles,” said Strum. “She was an avid cyclist, waking up at 4 a.m. every morning to go on her daily 40-mile ride. After cycling, Jean’s next favorite activity was hiking in the nearby Santa Monica mountains. In less than a year, progressive MS has taken all of that away from her.

“Progressive MS has also affected Jeanne’s cognitive abilities, leaving her with no short-term memory,” Strum continued. “Although I may visit Jeanne in her nursing facility today, she will have completely forgotten my visit by tonight.”

Shaikha Aisha AlKhalifa, Ambassador of Bahrain Shaikh Abdulla AlKhalifa
Shaikha Aisha AlKhalifa and Ambassador of Bahrain Shaikh Abdulla AlKhalifa. Photo: Tony Powell

While the physical and cognitive debilitation were, of course, devastating for Jeanne and her family, Strum said the worst part was not necessarily the symptoms of MS, but rather the “complete lack of hope.”

“As disease-modifying drugs designed to manage the more prevalent, milder, relapsing forms of MS continued to be introduced, there wasn't much in the way of good news by families affected by progressive MS,” said Strum. “And that was a hard reality to wake up to every day.”

Host of the RealTalkMS podcast Jon Strum, president and CEO of the National Multiple Sclerosis Society Cynthia Zagieboylo
Jon Strum, host of the “RealTalk MS” podcast, joins Cynthia Zagieboylo, president and CEO of the National Multiple Sclerosis Society. Photo: Tony Powell

But in 2013, Strum said the situation began to turn around in the MS community. That’s when the National MS Society and MS organizations around the world established the International Progressive MS Alliance, “an unprecedented global response to the challenge of solving progressive MS.”

“Initially, the alliance represented hope,” said Strum. “Today, the alliance represents progress. Transformative research funded by the alliance has already led to promising initial discoveries and more are sure to follow. While we’ve seen enormous progress in a short time, there is still work to be done. Now is the time to accelerate breakthroughs, to change the world for people living with MS.”


Hannah Vandegrift is an editorial intern for The Washington Diplomat.

 
 

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