Hello readers! I am sharing a letter I wrote to my sister on October 6, 2023 while sitting in a sesson at the Heart Failure Society of America annual scientific session held in Cleveland Ohio. I intended this letter as a way to talk to my sister who passed away in June 1995. For those of you who have lost a loved one, we know we talk to them often, but I felt on this topic I wanted to write a letter – I later read this letter at the HCMA annual meeting. Lori is truly the core of all work done at the HCMA – she is my super power, my guide, my heart and my very loved sister.
The day you left us our world shattered. Your children were in pain and it was our job to continue your work to give them roots and wings. Today they are grown, married, successful in their chosen career paths, happy, healthy, and kind humans. You are now the grandmother of 2 beautiful boys. You also are an aunt to my beautiful daughter Rebecca who you felt kick my very pregnant belly as you were in a coma prior to your passing, she was born a month after you left. You also have 3 great nieces who are beautiful young ladies.
Shortly after your passing I was incredibly angry, your death was preventable. I spent years making people, institutions, and policy makers accountable for their failures. I am going to tell you about some of this shortly.
You were 36 when you died, I was 26. Your children are now older than you ever were on earth. I have lived longer without you then with you. It is hard to believe because you have been the most influencetual person in my life.
Every holiday table or party your laugh is missed, your cooking… well it was always a topic of conversation which are also missed. We have missed you so very much in many ways. Everytime I hear Crocodile Rock I see you dancing in your bedroom, 20 years old, beautiful, happy, and full of life.
So why after 10,340 days or 28 years, 3 months, 21 days, am I writing to you? Do you remember the day we say in your house at the dining room table and talked about starting a support group for patients with HCM? Well Sis, I did a “thing”. I want to tell you about it.
I started a non profit organization to address the needs of the hypertrophic cardiomyopathy community and ensure the medical errors that lead to your death end, in short I dedicate my life to keep patients safe, families whole, and advancing clinical care and the science. I admit I am my harshest critic, but after 28 years I can look back and see the efforts have paid off but more work is needed.
The organization is the Hypertrophic Cardiomyopathy Association, we are a board of 12, staff and contractors of 15, 400 volunteers, 50 HCMA Recognized Center of Excellence (COE) programs, over 500 clinicians, researchers, and COE staff. A year ago a fund was created in your name to assist patient with travel to access health care for HCM. The newest challenge yet wonderful one is we are partnering with industry. Lori there are now drug therapies specifically for HCM and many under development. But, what happened this week is something I wasn’t sure I would see in my life. A young woman, 27 years old was given a simple injection in an IV which contained a piece of genetic material to correct the gene mutation that causes HCM, in fact the same mutation that runs in our family MYBPC3. It is early days and only one brave amazing woman, it’s so incredibly inspiring that a cure may someday be possible for some, including your children and grandchildren and mine.
My work isn’t done, in fact in someway it feels like it’s just begun.
Lori – you changed the HCM world, your story is known around the world, patients have found their way to care worldwide because of you and I wanted to let you know what an honor it has been being your sister.
I will write again, I miss you, love you and know someday we will be together again but for now I have lots of work to do down here.