Karen and Scott Williams
5334 Hollow Tree Lane * Keedysville, MD 21756 * (301) 432-8559

April 24, 2024

Dear Friends, Family and Neighbors:

As most of you know, our youngest daughter, Ashley was diagnosed with Cystic Fibrosis (CF) a few weeks after her birth.  CF is the most common fatal, genetic disease in the United States.  It affects more than 30,000 children and adults in the U.S (70,000 worldwide).  It is an inherited disease caused by a defective gene that produces abnormally thick, sticky mucus due to the faulty transport of sodium and chloride to the outer surfaces of the cells that line organs such as the lungs and pancreas.  This abnormal mucus leads to chronic lung infections, life-shortening lung damage, and obstructs the pancreas from sending digestive juices to the intestines.  A bacterial or viral lung infection that has a minimal impact on a person without CF could be devastating and potentially life-threatening to someone with the disease.  One in 31 Americans – more than 10,000,000 – is an unknowing symptomless carrier of this disease.  An individual must inherit two defective CF genes, one from each parent, to have CF.  On average their lung function decreases at the rate of approximately 2% each year which ultimately leads to respiratory failure.  As of today, there is NO cure.

Ashley still lives in Madison, WI, where she is working as an IT Solutions Engineer at Epic, an IT company, specializing in healthcare.  She is thoroughly enjoying the fact that she lives in the heart of downtown Madison.  She always seems to be participating in different adventures as she navigates life in this new place.  As part of her work, she travels to Houston one week out of every month for a specific client.  She “seems” to have adjusted to the cold winter temperatures, and we continue to be amazed and feel so blessed as she navigates her life with no consideration or limitations related to CF.

Ashley has transitioned to a new CF Care Center in Madison.  Ashley continues taking Trikafta, the first triple combination therapy available to treat patients with cystic fibrosis who have at least one copy of the most common gene mutation found in CF (which represents about 90% of the CF population, or ~27,000 people in the U.S.).  Trikafta is a combination of three drugs that target the defective CFTR protein.  It helps the protein made by the CFTR gene mutation function more effectively – basically, this is the “cure” we have all been waiting for, but improvement on this treatment still continues! Ashley has been on Trikafta for a little over four years now. Her overall lung function continues to be well above 100% and her cough continues to be mostly gone!  At her last appointment, she was officially allowed to stop doing both of her daily nebulizer treatments due to how well she is doing and her visits to the care center are down to twice per year, rather than four times per year – absolutely amazing!

The cystic fibrosis care model is evolving to support people living longer with CF and their increasingly diverse health needs.  Catalyzed by the approval of Trikafta and the COVID-19 pandemic, this adaptive and personalized care model encompasses novel ways to connect clinicians and patients.  Evolving the CF Care Model acknowledges individual patient needs as the population becomes more diverse and one model will not fit all.

Over the past years, we have seen and experienced these amazing treatment breakthroughs.  Ashley and 90% of the CF community have been able to benefit from these treatments.  Without Trikafta, I’m not exactly sure how Ashley would be doing.  Every day, thanks to supporters like you, we are making vital progress in the fight against Cystic Fibrosis – now, more than ever!  But we can’t call this finished until there is a treatment or cure for all.  We, with loved ones in the CF Community are in this together! As friends and family, colleagues and neighbors, we must actively support the search for a cure for all.  With your help, the CF Foundation can pursue every opportunity for promising research that can lead to this goal.  For the past 24 years, through the combined efforts of friends and family, we were able to raise over $20,000 each year!  Everyone who helped contribute deserves a huge round of applause.  We really appreciate the support! 

Please support the CF Foundation and our family in helping make CF a disease that you “LIVE WITH”.  Again this year there will be a NOVA Great Strides Walk on May 18th.  Please help us make CF stand for CURE FOUND by making a tax-deductible contribution.  You can either mail a contribution to us at the address above OR donate online at the following:

https://fightcf.cff.org/CDDEV_Great_Strides_PC3_2022/dashboard.html?pc2_page=center&fr_id=10382#/home:~:text=https%3A//fightcf.cff.org/site/TR/GreatStrides/78_Metro_DC_Washington_DC%3Fpx%3D1641677%26pg%3Dpersonal%26fr_id%3D10382

Please try to respond as soon as you can.  We can continue making donations up to and even after the walk date.  Make checks payable to The Cystic Fibrosis Foundation.

 If you have any questions, please feel free to contact us at (301) 471-1696.  We are planning to do a fund-raising letter like this each year, so please keep us in mind as you plan for your charitable contributions for the year.  If you know of anyone else that may want to help us out or if you want to start a letter-writing campaign of your own, please pass this letter along.

Thank you for your support!  We hope you and your families are staying safe and healthy!

Scott, Karen, Taylor and Ashley Williams

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