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The Connecticut-Rhode Island Chapter works to improve the quality of life for people affected by MS in Connecticut and Rhode Island raise funds for critical MS research. Join the movement toward a world free of MS.

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The Ties That Bind

April 20, 2016

Representative Betty Boukus (center) and Representative Hilda Santiago (far right) pose with Ashley Brown (second from right) and students from Capital Preparatory Magnet School at MS Action Day at the State Capitol.
HARTFORD, Conn - When Angelique and five of her classmates from Capital Preparatory Magnet School in Hartford entered the Old Judiciary Room at the Connecticut State Capitol Tuesday, March 29, they came prepared not only to learn but to share their personal stories. Inspired by their mentor, Ashley Brown, the students knew that they could be part of the change they wanted to see in the world.

“When I was just six years old, my mom passed away from multiple sclerosis,” began the now 17-year-old Angelique of New Britain. “I want to share my story with legislators, tell them what my brother and I had to go through after losing our mother at such a young age, and ask them to provide support to families affected by MS.”

It was Angelique who led the charge to the Capitol. She asked Brown if she and her classmates could visit because it was the 15th Annual MS Action Day hosted by the Connecticut Chapter. Legislators would be on hand to hear about the concerns of their constituents affected by MS. Interestingly enough, Angelique may have never even known about MS Action Day, and the impact she could make, if it weren’t for the coincidental connections she shared with Brown.

“I was 19 years old and in college when I felt a tingling sensation in my hands and feet,” recalled Brown.  “Soon after I had difficulty moving my leg and was dragging it up the stairs.  I went to the hospital and had an MRI and spinal tap which confirmed a diagnosis of multiple sclerosis.”

More than 6,500 Connecticut residents are living with MS, a potentially debilitating disease. The cause is
unknown and there is currently no cure. Symptoms can include numbness in the limbs, difficulties with vision and speech, stiffness, loss of mobility and, in some more severe cases, total paralysis. The progress, severity and specific symptoms of MS in any one person cannot be predicted.

Brown, 30, who now walks with the assistance of a rollator walker, has been able to teach her students about the disease and raise awareness for multiple sclerosis.

“Before becoming the project program support facilitator at Capital Prep, I taught reading to second, third, sixth and seventh graders,” said Brown. “Many of the students I have now, I taught earlier in my career.  So these students, and their parents, have seen the progression of my MS. They have witnessed imbalance and cognitive issues. They have seen the physical changes. I’ve been able to raise awareness of multiple sclerosis and today I’m pleased to be able to show my students that they can do the same by talking with their legislators.”

A total of 48 legislators attended MS Action Day and met with nearly 100 constituents, including Brown’s students. State Representative Elizabeth “Betty” Boukus, who represents the 22nd District including Plainville and New Britain, talked with the six Capital Prep students, five of whom reside in New Britain, about MS and their desire to help those whose lives have been impacted by the disease.

“It is especially meaningful to learn of the concerns of youth in my community,” said Boukus. “I’m so pleased that these students from Capital Prep came to MS Action Day to share their stories and use their voices to help make positive changes for themselves and others who are affected by multiple sclerosis.”

Boukus learned that Angelique and her brother were not the only students in the group whose lives had been changed by MS. Chardonnay, also from New Britain, shared that her mother was recently diagnosed with the disease.

“The impact MS has on my life hits me more and more each day,” explained Chardonnay. “My mother used to do everything. She took care of my brother and me. She used to work, too, but she can’t now because of her MS. Now I’m doing what I can to help my mother and family – like cleaning the house and doing other chores.”

While MS has no doubt impacted the lives of some of Brown’s students, it has also given them a cause for which to fight. Next year, as a senior, Angelique will embark on her social justice project, a requirement for graduation. The assignment involves choosing a problem in the community and developing a plan to change or improve it. Components of the project include raising awareness of the issue, writing a paper and giving presentations to advisors, teachers and parents.

“I want my project to be meaningful,” explained Angelique. “So I’ve decided to focus on the challenges of MS and the impact it has on children who have a parent with MS as well as children who have lost a parent to the disease.”

MS Action Day provided Angelique with a platform to begin her senior project and to share her story. It was the first of what is sure to be many opportunities for her to make a difference in the lives of those affected by multiple sclerosis. In fact, on April 17, both Angelique and Brown joined over a thousand other individuals making a mark against MS at the 2016 Travelers Walk MS in West Hartford. Angelique walked in remembrance of her mother and Brown volunteered and walked with her family on team “Brownies Movement.” 

“Being with a thousand other people advocating for those affected by MS is powerful,” said Brown. “We’re stronger, together.”

This spring, over 10,000 people will have walked at nine Walk MS locations across Connecticut. Five walks were held the weekend of April 16 and 17 with four additional walks happening the weekend of April 30 and May 1 in East Hartford, Stamford, Litchfield and West Haven. The Chapter hopes to raise $1.4 million through this year’s Walk MS events.

Funds raised at Connecticut Chapter events, such as Walk MS, ensure ongoing scientific research to find a cure and provide for the continuation of vital programs and services offered by the chapter to Connecticut residents affected by MS, like Angelique and Brown.

“While our tie to multiple sclerosis has created a very special bond between Angelique and me, events like MS Action Day and Walk MS make it even stronger because we are reminded that we’re not alone in our fight to make a difference for people affected by MS,” shared Brown.

Angelique sees that as well.

“After my mother passed away, one of the biggest things I learned was that I could do things on my own,” said Angelique. “That realization gave me a sense of strength and independence. At this stage in my life I’ve learned that strength can come from dependence too. We have to depend on one another – our friends, teachers and legislators – to make the difference we want to see in the world.”

For more information on the Travelers Walk MS or services offered by the National MS Society, Connecticut Chapter, go to ctfightsMS.org.

About the Connecticut-Rhode Island Chapter of the National Multiple Sclerosis (MS) Society

The Connecticut Chapter strives to provide knowledge and assistance to help people with MS and their families maintain the highest possible quality of life. These goals are achieved through vital national and local programs.

About Multiple Sclerosis

Multiple sclerosis is an unpredictable, often disabling disease of the central nervous system that disrupts the flow of information within the brain, and between the brain and body. Symptoms range from numbness and tingling to blindness and paralysis. The progress, severity and specific symptoms of MS in any one person cannot yet be predicted, but advances in research and treatment are leading to better understanding and moving us closer to a world free of MS. Most people with MS are diagnosed between the ages of 20 and 50, with at least two to three times more women than men being diagnosed with the disease. MS affects more than 2.3 million people worldwide.

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