Karen and Scott Williams

5334 Hollow Tree Lane     *     Keedysville, MD 21756     *     (301) 432-8559
 
April 20, 2025
 
 
 
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, with her boyfriend, Graham, although that has looked a “little” different this year. Ashley has had quite an eventful year!  She took a break from working to fulfill some “bucket list” items.  When Ashley comes up with a bucket list, believe me – it is quite a list!  She came home and stayed with us in October and stayed through the holidays!  What a gift that was!  It was so great having her home for three months!  On January 1^st, she started her travel journey to Australia, New Zealand, and Thailand.  I am so in awe of her journey.  She travelled alone, moving from place to place in Australia for about 2.5 months, then moving on to New Zealand for a few weeks, and finally Thailand for a few weeks.  I am able to calmly write about this because she is now back home!  She made it back about 2 weeks ago.  Ashley had so many adventures including scuba diving, canyoneering, hiking, surfing, boat cruising, and island hopping, visits to elephant sanctuaries, and even took some cooking classes.  Those are just a few highlights – I can’t begin to tell you everything she did!  She met so many new people and yes, even experienced impacts from an earthquake and even had a bit of a fender bender.  As a parent, while these adventures, of course, scared me to death, overall, I am just amazed at her bravery in following through on her dreams and taking on planning this adventure all on her own!  And you know, in the past I would have said I am amazed that she did all of this “despite” her having CF.  But, I no longer say this because CF isn’t something that has held her back in any way that counts.  Ashley lives her life living “with” this disease, not living around it! She certainly respects the impacts of this disease, but definitely doesn’t hold back because of it!  And she doesn’t need to – a reality that continues to stun me and leave me grateful for all who have been on this life journey with us, supporting us all the way!
 
Ashley continues being treated at her CF Care Center in Madison, WI, and worked with her team regarding her travels.  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 five years now. Her overall lung function continues to be well above 100% and her cough continues to be mostly gone!  She has officially been 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!  She was given permission to scuba dive as long as she wasn’t actively sick.  Trikafta has absolutely been a life saver for Ashley!
 
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 25 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 17th.  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:
 
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.
http://fundraise.cff.org/NOVA2025/TeamAshley?tab
 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