Life is funny. If someone had told me when I graduated college that I would be leading an effort to help people with ALS and to put an end to this disease, my response would have been “ALS? What the heck is that?” But now, I can’t imagine a life not knowing what it is, not fighting every day to ensure patients get quality care, and not fighting like hell to find a cure for this disease.
I didn’t have a personal connection to ALS prior to joining The ALS Association in 2013. I worked in faith-based nonprofits and on arts and culture projects in urban Dallas. After about ten years, I knew it was time to move on to something new. I hadn’t been looking for something in health – really, this job found me. And I couldn’t be happier.
I wasn’t into this job for one week before the amazing people battling ALS grabbed my heart. Every day I am inspired by the people we serve. The ability for those fighting this disease to rise above it and fight is something I will never be able to let go of. I wish it was different. I wish that I was meeting these people outside of an ALS diagnosis. I wish this disease was not stealing amazing men and women everyday. I wish like hell ALS didn’t take my friends. It is these wishes that drive me to be active in the fight, not to sit idle.
The Texas Chapter has grown a lot in the past few years, but we still have a lot of growing to do. We have significantly increased the amount of people we serve. We have added clinics, started a general grant program to help families with medical expenses, and increased our investment into our national research programs. But we need to do more. We have to do more.
My vision for our Chapter is twofold: Serve every person living with ALS in Texas, and be the largest contributor to research in the nation. I truly believe our great state of Texas can lead the effort in finding a treatment and a cure for ALS. However, the Texas Chapter cannot and will not do it alone.
Our Chapter recently started the process of creating a new strategic plan. It was a difficult process. We laid everything out on the table. We didn’t ignore difficult conversations. In some cases, it meant letting go of programs and people. Growth is always painful, but it refocused us.
Through the strategic planning process, we learned many truths, but one in particular that I hold onto is the importance of partnerships. I am a firm believer that we can go much further together than we can alone. For an organization like ours, that means breaking down walls of pride or thinking we have it all figured out. Big surprise – we don’t. But we, as the Texas Chapter, will leave no stone unturned in the quest to find a cure to ALS, and we certainly can’t do it alone.
We see the amazing work organizations like Every 90 Minutes and Team Gleason are doing to care for patients and invest into research. We see the great work on a national level that The ALS Association, MDA, and ALS TDI are doing to fight this disease. Whether you’re a donor, a company, or an ALS organization, reach out and start a conversation with us about how we can work together to fight ALS on all fronts. We may not always see eye to eye on everything, but we can work through that. We all care about people getting quality care and putting an end to this terrible disease. Let’s start a conversation and go from there. I believe amazing things could happen if we all worked together.
Thank you for all you do. ALS Organization has been amazing to us. Linda and Steve at the San Antonio office have been a life saver for me. My husband is 41 and has ALS. He is a veteran. We live in Corpus Christi, Texas and there a very few ALS patients our here and the VA has no clue on how to help them. I fight everyday for the basics he needs and keep them from doing wrong things. With STeve and Linda’s help finally after a three month battle we finally have a ventilator, power wheel chair rep comes out tomorrow and our wheel chair accessible van is here next month and beginning next month we get a VA pension. When I had to quit work we live on social security for several months it is hard. But God is changing all of that. We still homeschool our last child.
Sherry,
I am glad you have been able to connect with Steve and Linda, they are rockstars! We will always help however we can. Much more work has to be done in educating medical professionals, the VA and others about ALS. We are making ground, and stories like yours helps us know what the issues are. Keep on fighting , we will be here alongside you.
Hello Tanner Hockingsmith.
I just read your story with reference to your determination to pursue a cure for ALS. I greatly admire your ambition to leave no stone unturned in the fight for a cure for this cruel muscle wasting disease. Firstly I would like to explain to you that I am one of those who fight every day to overcome this deterioration that has invaded my body. I am now 40 years battling with the disease. It’s known in Europe and other countries as MND “Motor Neuron Disease”. In New York, it is known as the “Lou Gehrig’s Disease”. It took that iron horse of the New York Yankees, baseball player down in just four years and it is still continuing at the same speed. A few of us has slipped through the net, without any treatment. I am an optimist by nature and I do believe that a cure will be found one day. But at 83 years of age, I doubt very much if it will come in time to save me. 🙁 But that does not worry me. I’ve had a good innings and if something is discovered to arrest this disease and I’m not here to witness that – then I will smile from the heavens above knowing that I have contributed something to this breakthrough and the people who are then being diagnosed will benefit greatly. Thank you for your determination in trying to find a cure and if I am of any benefit to you – do not hesitate to contact me! Andy McGovern, survivor of MND.
Andy,
Thank you for the kind response and sharing your story, it is truly amazing. Thank you for being a fighter and providing hope. We have more work to do, but together we can end this disease!