Message from the Chair

John Platt, Chair, PA Government Relations Committee

As I sit here, I reflect on the news of Annette Funicello’s passing. In Disney’s official statement on the matter there is one line that sticks a knife into my heart.

She died peacefully from complications due to Multiple Sclerosis, …

It takes my breath away to think this line may be associated with my very mortality. Or that my daughters will have to stare at these words wondering, “if only more had been done”.

Advocacy in its real definition can be intimidating. Advocacy can be something that may not interest you. Advocacy may be something you never even considered. Advocacy to me can be broken down to its simplest. DOING. That’s all. Telling my MS story. Bringing light to costs and barriers to the very drugs that show hope for the MS community. Creating awareness for MS research dollars in jeopardy of being cut from budgets. By sharing, bringing light to, and creating awareness we can stamp out the “if only more had been done” scenario.

I write today knowing…

Over 136 emails, and numerous calls, were made to PA State Senators urging them to co-sponsor Senator Mensch’s resolution that would conduct a study on the impact of specialty tiering, co-insurance and co-pays on injectable medications in PA. As a result, there are 17 co-sponsors to this legislation.

20 Proclamations were secured by volunteers across the Keystone State recognizing MS Awareness Week and the work of the National MS Society. Resolutions were also introduced in the PA Assembly and Senate.

BUT more importantly, is this enough? I write today knowing…

There are fundraising events such as Walk MS, Bike MS and Muckfest MS popping up all over the state, providing opportunities for communities to come together to raise funds for a cure. Well, advocacy is another opportunity.

One of my favorite books, Hemingway’s ‘The Sun Also Rises’ ends like this.

“Oh, Jake,” Brett said, “we could have had such a damned good time together.”

“Yes,” I said. “Isn’t it pretty to think so?”

Isn’t it pretty? Isn’t it pretty to think WE CAN do more to stop MS in its tracks! I never want to read of someone passing from complications of Multiple Sclerosis. I can do more, together we can do even do more, and won’t you join us? I plead to you, join me in pushing forward.

Email me at John@johndplatt.com or Karen at Karen.Mariner@nmss.org to learn about how you can join me today.

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