Good Things Still Happen

David Yon, September 1, 2020

​Yes, good things do still happen.  Sometimes, however, it takes awhile.

Approximately 40 years ago, Ervin Holiday approached the Directors of the Sickle Cell Foundation, Inc. with the idea of holding a 5K race that would serve as a fundraiser for the Foundation.  The Foundation, less than 2 years old at the time, was dedicated to bringing attention to a disease that few people knew much about and that affected only a portion of the population.  The board approved the concept and with the critical help of Larry and Cheryl Jennings and Lynette Brown a new race, 4 miles long, was born in 1982. Larry and Cheryl were especially active in the local running community and believed it would be a good way to get the word out about the impact of this awful disease which hits African Americans much harder than any other group.

Dr. Jonathan LaPook graduated from medical school in 1980.  As a new doctor he was excited to treat and hopefully cure his patients of diseases.  He quickly learned about one disease that was incurable – Sickle Cell Disease.   A blood disorder, sickle cell anemia is one of a group of disorders known as sickle cell disease. It is an inherited  disorder in which there aren’t enough healthy red blood cells to carry oxygen throughout a person’s body. For many it creates “bone crushing pain.” For Dr. LaPook, it was a frustration that disrupted his concept of the healing doctor who always made his patients well.  Instead, “we could do nothing” for these patients beside treat their pain, he stated.

Normal blood cells are round and move easily through blood vessels. In Sickle Cell Anemia, the red blood cells are shaped like sickles or crescent moons. They are rigid, sticky cells that can get stuck in small blood vessels and block blood flow and oxygen to parts of the body. They also break down much quicker than healthy cells.

This evil year we call 2020 would have been the 39th time the race (now a 5K) would have been run but for the intervention of COVID-19.  Now under the direction of Jeff Rollins (Vice Chair of the Foundation) and Paul Guyas (Gulf Winds Track Club President).  The event has accomplished what Mr. Holiday wanted – it has increased  awareness of the disease dramatically and it has served as the major fundraiser for the Foundation. 

But this is the Year of the Virus and no city or county permits are being issued for road races at this time.  However, the organizers of the race are not throwing in the towel.  Not when we are watching one of the most amazing medical advancements of our time.  The word “incurable” is harsh and its message is depressing. But what a great feeling when it is replaced by cured.  You can still support the cause and participate in the “virtual” version of the race by running or walking the anytime run or the anywhere run.  Details are at:  https://runsignup.com/Race/Events/FL/Tallahassee/GWTCSC5kVirtual .  You can also just make a donation if you prefer.

Forty years after being made to feel so helpless when treating patients with sickle cell diseases, Dr. LaPook, now the Chief Medical Correspondent for CBS News, got to watch the miracle as he spent more than a year following patients in clinical trials with the National Institutes of Health (NIH.) The common link for the following three cases is they appear to have been cured of Sickle Cell Anemia through gene therapy. Dr. LaPook watched as one of those patients, Jannelle Stephenson, went from a circulatory system filled with sickle cells that were causing “bone crushing” pain to one filled with normal cells without any pain. Lynndrick Holms participated in NIH trials in Washington D.C. According to the NIH, the treatment involved taking stem cells from his bone marrow, fixing the gene that causes his cells to sickle and reinserting that gene using the H-I-V virus, minus the parts that can infect, to deliver the heathy cells. Before sending the repaired genes back into the body, the patient undergoes chemotherapy designed to rid the body of sickle cells.

Manny Johnson is 21 years old and he had a severe case of Sickle Cell Anemia which required monthly blood transfusions. After receiving a new gene therapy treatment, he has been symptom-free for six months.

The gene therapy treatment silences a gene called BCL11A. This has enabled Manny’s cells to produce the fetal form of hemoglobin, which his sickle-cell mutation does not affect. The treatment also suppresses his adult, sickling hemoglobin.

It differs from other gene therapy approaches by having a two-pronged action. It represses production of the mutated beta hemoglobin that causes red blood cells to form the stiff “sickle” shapes that block up blood vessels. It also increases production of the fetal form of hemoglobin, which people normally stop making after birth.

The work of the Sickle Cell Foundation in Tallahassee and surrounding area is more important than ever. These are just three clinical trials, so it is a long way from here (curable) to the finished line (cured). But with a lot of help it is no longer just a vision dreamed by Mr. Holiday; it is a plan to put into action.

 

 

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