Advocacy Works by Kathryn Alexander

A Historic Trip to the Capitol

The taxi dropped me off at the hotel, the nation’s capitol in the background. Despite the gray skies, serious looking business men and women strode down the bustling streets. For a second, I soaked in the charged energy of the city sidewalks.

I made my way in the grand foyer of the beautiful hotel, taking in the architectural splendor. I checked in, dropped my luggage, and descended a grand staircase.

A pretty woman named Tania directed me to the reception hall, where none other than Abraham Lincoln stood, tall and silent. Next to him was JFK! 

The year was 2018. 

Ok it was this year. The presidents were card board cutouts.

But Tania was very real. On behalf of the ALS Association, she welcomed me to the National ALS Advocacy Conference, which I had the blessing to attend because of Max’s Ride’s support.

Over 570 patients, loved ones and ALS advocates met in D.C. to for the ALS Advocacy Conference. Our goal was to educate congressmen and women on why ALS is a cause we need to support, and ask them to please make the necessary votes.

For two days, we worked on the education component. We, caregivers, daughters, sons, spouses, and tough patients listened to those at the forefront of fighting ALS.

Informative presentations were sandwiched with social breaks, where we mingled and networked and learn how others handle ALS. Vendors demonstrated new products and services that can increase quality of life for patients.

Twas the Night Before Advocacy Day

We broke into our strategically planned groups and discussed the following day’s itinerary. The ALS Association did a wonderful job teaming us in geographical groups to meet our representatives, who live in our districts and have vested interest in hearing us.

My group included a strong family whose patriarch, a veteran, is living with ALS; a newly diagnosed couple who is still reeling from his diagnosis; and me, the daughter of a veteran, husband, dad, and good man who lost his life too soon.

Game Day

We met with representatives from the offices of Ted Cruz, Beto O’Rourke, Bill Flores, and John Carter.

Someone from every office took time out of their day to listen kindly and ask genuine questions. We shared our stories; the good, the bad, the heartbreak and urgency. They took notes and promised to follow up. 

As we walked around the sprawling Capitol grounds, we crossed paths many times with other groups from our contingency. We collectively had 350 meetings with representatives that day, and I couldn’t help but feel we were making a difference. 

Fund Our Future

What I witnessed and I encouraged you to remember, is that there are many people fighting ALS, from many different angles, 24/7. Lab teams are aggressively seeking funding, researchers are methodically chasing down treatments and cures, and patients and their loved ones are making their voices heard.

There is a lot of passion out there, a lot of energy! I’m grateful for this abundance of passion and energy because we can’t bottle that up and donate it. 

But we can donate money, and the wheels of progress depend on money. 

The reality is that we have to fund labs, researchers, and people to go talk to our decision makers. Advocacy alone allocates millions of dollars toward research.

I can’t help but get a little emotional when I think about how many people have a common goal of ending ALS. We are in this together! ALS is bipartisan and equal opportunity. I bet even Old Abe and JFK would stand by our sides for the cause.

I could not have done this trip without the financial support of Max’s Ride. I’m eternally grateful, and I encourage you to please give generously and regularly until none of us or our loved ones are threatened by ALS anymore. 

Please click the “DONATE” button now.

2018 Texas Chapter ALS Association Advocacy Team
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