(BPT) - Suzanne is a Las Vegas resident who spent nearly three decades fundraising for museums and universities until a multiple sclerosis (MS) diagnosis in July of 2012 changed her life. Now MS keeps her from working full-time.
"Following my diagnosis my self-esteem took a hit and fear came into play because I was a major bread-winner in our family," said Suzanne.
Suzanne isn’t alone. MS affects nearly 2.5 million people worldwide, including more than 400,000 people in the U.S. People living with the disease can face many challenges due to unpredictable symptoms that disrupt their life and career. One aspect of MS is often overlooked - its financial impact.
In a survey conducted by National Disability Institute, the Multiple Sclerosis Association of America, and Acorda Therapeutics, two-thirds of respondents living with MS said they are worse off financially since their diagnosis, and more than three-quarters have difficulty paying monthly expenses. Most respondents don't know about financial stabilization programs that are available to them, with many relying on family members for financial advice.
"MS throws them a curveball and there is some panic ... feeling a loss of control over what they had a good handle on," said financial literacy advisor Marlene Ware. National Disability Institute tapped Marlene to pilot a new financial coaching program that provides personal guidance for people living with MS and their families. "For many this is the first time they've been able to address their individual issues and feel safe that the answer was going to be right for them," Marlene said.
Suzanne is one of the first participants to take advantage of the new financial coaching program. She worked with Marlene to restructure mortgage payments so the loan would be paid in full within five years, something Suzanne says she wouldn't have thought about doing.
"It's great to have a financial coach who understands MS," said Suzanne. "It's not like you can just stop. You have to keep trying things that work and not get down. Some people don’t know which way to go, and there’s always a way."
The new financial coaching program is part of National Disability Institute’s Real Economic Impact (REI) Network, a resource for policy insights, tools and trainings that promote economic advancement. The REI Network is supported in part by Acorda Therapeutics’ community outreach.
“People living with MS are often dealing with unique financial challenges because their ability to continue to work and remain financially independent may be compromised, so advance planning and preparation is essential,” said Tierney Saccavino, Senior Vice President of Corporate Communications at Acorda Therapeutics. “We know that people with MS don’t just need new treatment options… they need support, care and information that can help improve their lives overall. It’s really meaningful to us to be able to support an important program like this.”
The REI Network already presents an annual series of free financial wellness webinars for people living with MS, and the financial coaching program has been added to connect experts with individuals for one-on-one guidance on everything from taxes and asset development to employment and benefits.
According to Marlene, every program participant is in a unique situation and requires tailored advice. For some, including Malika Mohamedi of New York, it's as simple as creating a new budget after closely reviewing bank statements and debit card purchases. "Analyzing the numbers is important, and simply seeing what I was spending was scary for me," said Malika. "It's empowering to take care of your own finances."
Others require more creative solutions. Marlene helped Nancy Southworth of Chandler, Arizona find a way to supplement her income by renting out a spare room in her two-bedroom townhouse. Nancy was diagnosed with MS in 1976. She spent years working at a library but her hours were recently cut, and at 67 years old Nancy is finding the job market difficult.
"In my experience, sometimes with MS the emotions can kind of take over," said Nancy. "This program grounded me and kept me moving in a positive direction rather than getting stuck in the mud."
In total, ten families affected by MS are participating in the pilot financial coaching program, and National Disability Institute hopes to expand the offering as part of the REI Network in the years ahead.