In November of 2018, Sara Cooper (our beloved friend, sister and sister-in-law) learned that she had a condition most commonly known as Lou Gehrig’s Disease and medically termed ALS (amyotrophic lateral sclerosis). Sara is only 56 years old.
Most simplistically explained in laypersons terms, ALS is a progressive disease where muscle tissue in the body slowly dies and causes increasing paralysis over time. Ultimately, ALS patients lose the ability to swallow, breathe and move. The person's mind, however, usually remains unaffected so he or she is acutely aware of most everything. ALS is always fatal and patients typically live for 3 to 5 years after diagnosis. There currently is no cure for ALS.
Despite this terrifying news, Sara's spirit and life long commitment to her community have only strengthened and she has been (and continues to be) an inspiration to her family and friends in both her attitude and her intent to turn the struggles of this horrible disease into something positive for herself and others.
We are so inspired by Sara and the energy she is putting towards this disease which includes raising awareness about ALS in her local community and helping others who are also suffering with the disease. She recently joined the Board of Hope Loves Company, another nonprofit started by a neighbor (who has become a good friend and amazing resource for Sara), with the mission of providing educational and emotional support to children and young adults who have (or have had) a loved one battling ALS.
When we asked Sara to give us her thoughts on being diagnosed with ALS, this is what she had to say:
"I was initially shocked and very scared by this diagnosis but I quickly became determined to use my skill set and deep roots in the community to make a difference in the fight against this awful disease. One of the biggest challenges for me has been trying to navigate all of the many issues which immediately arise when you're diagnosed with ALS including medical, legal and financial issues. It has been a huge struggle these past few months to personally process all the information and communications and to manage all the different parts of dealing with ALS. It is very overwhelming.
There doesn't seem to currently exist a publicly available "roadmap" resource to aid a newly diagnosed ALS patient in navigating all of this. I have found it personally very helpful to create such a roadmap for myself. Ultimately, I hope to create a publicly available resource for other newly diagnosed ALS patients to create their own roadmap and also to further raise awareness in our community about this disease. My work as a marketing consultant (my company is Cooper Creative Group) which I continue to do, and giving back to my community, are both incredibly important to me. My goal is to remain as strong as possible for as long as possible so that the work I'm doing can also help others in the future.
My spirits are continually buoyed by the tremendous outpouring of love and support from my friends and family which has been more humbling even than this disease . . . I am truly blessed. I am grateful that my family and friends have created the nonprofit Help for ALS in my honor and I am hopeful that my friends and family will all contribute.
I am a fighter and I am determined to make a difference. As Lou Gehrig said, and I concur, "I have an awful lot to live for.”
We would be honored to receive any gift amount, large or small, which you can contribute to Help For ALS. If you have any questions at all, please send us an email using the above GoFundMe email link.
Sincerely, Mary Jo Harris, Albert Cooper IV and Mary Platt Cooper (Directors of Help For ALS, a nonprofit corporation).