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40th Annual Ambassadors Ball Celebrates Advances in MS Treatments

By Anna Gawel

From D.C. to Denmark to the Dominican Republic, multiple sclerosis knows no bounds. In fact, over 2.3 million people around the world struggle with the debilitating disease. Many of those nations were represented at the 40th annual Ambassadors Ball on Oct. 2 hosted by the Greater D.C.-Maryland Chapter of the National Multiple Sclerosis Society.

The ball, which marks the unofficial start of the fall social season, celebrated its 40th anniversary this year. Dozens of foreign envoys along with members of Congress, captains of industry and philanthropic leaders attended the glittering affair, which was held at The Anthem, an industrial-chic concert venue in D.C.'s newest hotspot, The Wharf. Guests perused dozens of auction items, including many embassy-donated dinners and other items, and sampled sake courtesy of the Japanese Embassy, whose ambassador, Shinsuke Sugiyama, and his wife Yoko, served as this year's honorary co-chairs.


Supporters of the National Multiple Sclerosis Society Greater D.C.-Maryland Chapter’s 40th annual Ambassadors Ball include, from left: gala co-chair Sarah Rogers of Navigators Global; Greater D.C.-Maryland Chapter President Chartese Berry; Ambassador of Japan Shinsuke Sugiyama; Rear Adm. Susan Blumenthal, who was given the Champions Award; Yoko Sugiyama; Sen. Maggie Hassan (D-N.H.); and co-chair Cristina Antelo, founder and CEO of Ferox Strategies. Photo: © Tony Powell

"We have come a long way since that first ball in 1979, 33 years after the founding of the National MS Society in 1946," said Chartese Berry, president of the organization's D.C.-Maryland chapter. "The landscape of knowledge, research and treatment of multiple sclerosis has drastically changed, including earlier diagnosis and better understanding of MS pathology and a long list of treatment options that can help forestall disease activity and help manage symptoms for the over 1 million people in the U.S. and the over 2.3 million worldwide living with multiple sclerosis."

Since its inception, the Ambassadors Ball has raised over $20 million for the National MS Society, which supports research and treatment for those living with the disease, including 20,000 people in the D.C. area.

For people with MS, their immune system turns against them, attacking the protective sheath around the nerve fibers of the brain and spine. Symptoms range from vision problems and muscle weakness to numbness and difficulty with balance. Most people are diagnosed between the ages of 20 and 50, with women diagnosed almost three times more than men. The progress and severity of the disease is unpredictable and can strike without warning.


Ambassador of Japan Shinsuke Sugiyama, Greater D.C.-Maryland Chapter President of the National MS Society Chartese Berry, co-chair Cristina Antelo, co-chair Sarah Rogers and U.S. Protocol Chief Sean Lawler share a toast. Photo: © Tony Powell

That's what happened to Bernice McDowel on June 1, 1994, which "began like any other day for mom," said McDowel's daughter, Lexi Bendyna, who offered a deeply personal account of how MS has affected her family for the last 24 years.

"Little did she know, this day would change the entire trajectory of her life," Bendyna told hundreds of guests in the audience. "The entire left side of her body would soon go numb. In the weeks to follow, a team of neurologists, rounds of tests and an MRI would confirm a diagnosis of MS.

"From that day on, her mobility steadily declined," Bendyna said. "A limp led to many horrifying falls — I hope no child ever has to hear their mom scream of fear as she falls to the ground cracking her head open time and time again — many falls led to a cane, a cane led to a walker, a walker led to a scooter, and a scooter led to her being completely bound to a bed. My mom is now in her late 50s, entirely immobile, has cognitive dysfunction and needs 24-hour, round-the-clock care."


Ambassador of Oman Hunaina Sultan Ahmed Al-Mughairy and Shaista Mahmood attend the 40th annual Ambassadors Ball. Photo: © Tony Powell

On that note, Bendyna shined a spotlight on the hidden victims of the disease: the caregivers — often family members who put their lives on hold and struggle with the financial hardships of providing costly care for their loved ones.

"My days visiting with my mom are spent feeding her, bathing her, dressing her, brushing her teeth, changing her diapers, draining her catheter — doing whatever it takes to ensure that all her needs are met," she said. "As if the fear of my mom's disease is not enough, there are a slew of other worries constantly looming over our heads. How are we going to afford all of her medical needs such as medications, diapers, wipes, preventative bed sore cream, gloves, chucks, catheter supplies, a pressurized mattress, a hospital bed, a hoyer lift, a powered wheelchair, a shower chair, an accessible shower, a generator, aides, nurses, doctors — the list goes on and on."


Dr. Ivonn Szeverényi and her husband Ambassador of Hungary László Szabó attend the 40th annual Ambassadors Ball. Photo: © Tony Powell

Bendyna's mother has a type of MS known as progressive MS. Most people with MS are initially diagnosed with the "relapsing-remitting" form, in which their symptoms flare up for a time and then ease. But "people living with progressive MS face uncertainty, losing ground each and every day as they experience steadily worsening symptoms and loss of function," Berry said.

She noted that the National Multiple Sclerosis Society has launched the International Progressive MS Alliance, a partnership with over a dozen countries to fund research and find solutions for people living with the progressive form of the disease, which generally doesn't respond to the drugs used for relapsing MS (also see "Drug Ibudilast Slows Brain Shrinkage in Progressive Multiple Sclerosis" in the November 2018 issue of The Washington Diplomat).

In addition, the National MS Society has a network of 300 activists across the country who work with legislators to increase funding not only for MS research, but also to improve access to medication. The goal, Berry said, is to ensure that patients like Bernice McDowel never have to forgo treatment because they can't afford their prescriptions and that caregivers like Lexi Bendyna are compensated for providing loved ones with "the quality of life and dignity that everyone deserves to have."


Lexi Bendyna talks about her mother, Bernice McDowel, who has been battling progressive MS for 24 years. Photo: © Tony Powell

Berry said that while significant obstacles remain for people with MS, the treatment landscape has profoundly shifted in recent years.

"Quite frankly, we didn't see the first FDA-approved treatment for MS until 1994 — almost 25 years ago — and now we have 15 disease modifying therapies for multiple sclerosis. Before that time, anyone diagnosed with MS was told there was nothing that would help them. In 2017, just last year, we realized the first-ever treatment for people living with the more aggressive form of the disease, progressive MS," she said.

"I am so proud to be able to say that the National Multiple Sclerosis Society has been a catalyst for much of the progress we've seen, relentlessly driving research and clinical advances and feeding the intellectual pipeline, including early research investments that led to the approvals of all of the disease-modifying therapies now available. We have much more to do to fully understand and cure MS, but we're in a vastly better place for our patients than we were 40 years ago."

Anna Gawel is the managing editor of The Washington Diplomat.




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