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Increasing MS awareness in Pennsylvania

“Elected officials need to understand our disease and it is our responsibility to share our stories so that we can influence and impact policies that make a difference for those living with multiple sclerosis and other chronic conditions.” Karen, MS Activist, Pennsylvania

Being diagnosed with MS made Karen want to do something and become an MS activist. Karen applied to become a member of the Pennsylvania Government Relations Committee (GRC). She had no previous policy experience—she didn’t even know the Society advocated for legislation or policy. She just knew her story and that her story had power. She also knew that our legislators needed to learn about multiple sclerosis and its impact on the people they represent.

After becoming a member of the GRC, Karen went right to work and scheduled a series of meetings with federal and state legislators. One of those meetings was with U.S. Representative Jim Gerlach from Pennsylvania’s 6th District. Society staff had met with Representative Gerlach for more than six years and had repeatedly asked him to join the Congressional MS Caucus. His answer was always no. Karen scheduled a meeting and shared her story of being diagnosed with MS, the symptoms she experiences and how his support could help. She did not mention the Caucus during the meeting.

As she was leaving, Karen turned and said, “Representative Gerlach, there is one other issue I did not mention in our conversation. I understand that you don’t join Caucuses, but there is a Congressional MS Caucus. Please don’t answer me now, but as you read the information about the MS Caucus in your folder, think of me and my story and then you can give me an answer.”

Two days later, Representative Gerlach joined the MS Caucus. Karen’s simple act of telling her story and asking for a commitment changed a key decision maker’s mind. As part of the Congressional MS Caucus, Representative Gerlach will increase his understanding of MS and policies that can benefit the lives of those living with MS. 

Increasing access to accessible transportation in Rhode Island

“Now Rhode Islanders who use wheelchairs have an extremely important new form of transportation. This will allow people to get around, even last-minute, with great flexibility and safety.” Anna, MS Activist, Rhode Island

Accessible transportation is a necessity for many people with MS, but across the country it remains an unmet need. In Rhode Island, MS activists took on this challenge and won. By getting the word out through digital media and having a presence at the state house, MS activists played a crucial role in getting legislation passed that required the Rhode Island Public Transit Authority (RIPTA) to purchase accessible taxis. And they didn’t stop there. 

MS activists continued to have a presence at meetings with RIPTA and were front and center when RIPTA purchased and put 13 accessible taxis on the road increasing transportation access for thousands of individuals with disabilities!  

Support for family caregivers in virginia

Each year, MS activists urge Congress to continue funding the Lifespan Respite Care Program. Since 2009, 30 states and the District of Columbia have received grants to establish or enhance their statewide Lifespan Respite Care Programs that better coordinate and deliver quality respite services to our nation’s more than 60 million family caregivers. State grantees have made great strides, with some running awareness campaigns and others establishing statewide databases of available respite care. Some states—like Virginia—have started providing vouchers to families to choose and purchase quality respite care.  
 
Ray Heron’s wife Pam has MS and has needed round-the-clock care since the late 1990s. Ray spends about three hours in the morning and four hours in the evening helping Pam. While he is at work, Medicaid fortunately covers a certified nurse assistant to feed Pam breakfast, lunch and dinner, and manage her other needs including positioning to avoid pressure sores.
 
Ray and Pam were excited when through his volunteer work with the Society, they heard about Virginia’s Lifespan Respite Voucher Program. Ray called the agency that provides Pam’s care and discovered that the vouchers would fill the gaps in Pam’s Medicaid-paid care for up to three days. Ray and Pam applied and were approved for a voucher, which enabled Pam to have the support she needs and Ray to visit his parents – a six-hour drive away – who he hadn’t been able to see in years.
 
Ray is proud to call himself a family caregiver and happily points out a priceless benefit: “I still get to spend every day with Pam.”

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