There are so many real people making a real difference in Houston. J-Vibe is lucky to meet so many of them, and today’s story is no exception. In fact, this real person is exceptional and the real difference that she has been making for 24 years while running the Cystic Fibrosis Foundation in Houston is remarkable. Sissy Gorden Boyd is the Executive Director of the Texas Gulf Coast Chapter of the Cystic Fibrosis Foundation, and this is her story.
Cystic Fibrosis is a genetic disease and about 30,000 people in the United States are living with the disease. You can only get cystic fibrosis if both parents are carriers of the gene, and then there is a 25% chance of having the disease. There are about 1,000 new cases of Cystic Fibrosis diagnosed every year, and almost half the population of those that have the disease are over the age of 18.
Cystic Fibrosis is a lung and digestive disease. Imagine if you were cooking oatmeal on the stove and you left it on the stove and it became a big mushy mess. This is what having cystic fibrosis is like. Mucous gets in the lungs, and people who have the disease are susceptible to infections and can have problems breathing. Sometimes they may have to have breathing treatments, which can take place up to three times a day, and they may also have to take medication daily.
There can be pancreatic and liver involvement with cystic fibrosis. If there is pancreatic involvement, then mucous builds up in the pancreas and liver that can stop the absorption of food and nutrients that are necessary for growth and nutrition. If this is the case, then enzymes must be taken before food can be eaten. It has been shown that if a person has cystic fibrosis with pancreatic involvement, they have to take up to 8 pounds of pills per year of just enzymes.
Cystic Fibrosis Foundation
The Cystic Fibrosis Foundation has a network of care centers across the country, and ours is the Texas Gulf Coast Chapter, and the Doctors are through Baylor. The Cystic Fibrosis Foundation raises money and awareness through events, and they do about 16 events every year. The money that is raised is used for research, education, and care for patients.
Because of the money that is raised by the Foundation, Doctors and researchers are working on gene editing and have been able to identify 1800 mutations of cystic fibrosis. Also, although this disease is pill dependent, there are some drugs that are currently on the marketplace that are curing the disease and others that are increasing health.
Getting Involved with Texas Gulf Coast Chapter of Cystic Fibrosis Foundation
One of the many things we discussed with Sissy Gordon Boyd, the Executive Director, was how to get involved. If you are looking for an organization to volunteer with there are many ways that you can become involved.
- Great Strides – The walk that benefits cystic fibrosis takes place on a local level but helps the foundation nationwide.
- Any of the 16 events that are put on yearly are always looking for volunteers.
- If you have CF, you can always participate in a clinical trial. These tests are invaluable and are what are extending life spans and saving lives.
- CF is always looking for advocates who can spread the word about the disease and the cures, and especially for fundraising, which is what keeps the research alive and the treatment available to so many.
Sissy Gordon Boyd – Real People
Sissy Gordon Boyd is the perfect fit for this well run organization. She is kind, compassionate, caring, knowledgable and has helped to grow the Texas Gulf Coast Chapter in invaluable ways. She has seen lots of changes in the 24 years since she first came on as Executive Director. For instance, there wasn’t an adult care when she first started working there because the age of death was so early, but with all the reasearch they now do, lives are now prolonged, and adult care has become a priority.
Sissy knows this is a physically demanding disease on the family, but she also knows that there are now so many ways for people that have cystic fibrosis to have independence and to live a long and healthy life, and she has made it part of her mission to make sure that she continues to educate, help, raise funds for research and improve the lifespan and the quality of life for those that are living with the disease.
When Sissy looks back on her life, and especially those at cystic fibrosis, she says
I feel very blessed and very lucky. I found a job I feel passionate about and I am successful with and have a great marriage and great friends. I am very lucky.