Dear Friends and Family,
On Sunday May 21, 2017, our family is walking on behalf of our six-year old daughter, Scarlett, to find a cure for her disease, Cystic Fibrosis. Cystic Fibrosis is an inherited chronic disease that affects the lungs and digestive system of about 30,000 children and adults in the United States (70,000 worldwide). A defective gene and its protein product cause the body to produce unusually thick, sticky mucus that clogs the lungs and leads to life-threatening lung infections and obstructs the pancreas blocking natural enzymes which help the body break down and absorb food. Today, advances in research and medical treatments have further enhanced and extended life for children and adults with CF. Many people with the disease can now expect to live into their 30’s, 40’s and beyond.
The type and severity of CF symptoms can differ widely from person to person. Scarlett, who is currently a first grader at East School, has been very blessed, thus far with her health. We have been extremely fortunate this school year in keeping her healthy. Both the school and her classmates have done an excellent job being extra careful in the classroom, as it relates to hand washing and hand sanitizing. Scarlett is a very independent, outgoing, ray of “sunshine”. She loves attending jazz class and tae kwon do, playing soccer and softball, and being with her friends. Scarlett has two loving brothers: Tristan, eight years old and Sawyer, who just turned three!
Finding new medications to fight CF and to ultimately cure the disease is the driving force behind the Cystic Fibrosis Foundation. The foundation’s goal is to have a medicinal cure for all but 5% of the CF population by 2020…that’s right around the corner! Please help us make our dream come true and CURE CF. Every dollar counts!!
For those alumni walkers, please wear your “Sunshine for Scarlett “ team shirt. We will also provide more team shirts to new members while supplies last that day. Join us, Sunday May 21st, 9:15am, New Canaan High School, for a 2.8 mile walk (strollers, scooters, bikes welcome) and help us bring “sunshine” to the families who battle this disease every day of their lives and give them hope for more tomorrows. We cannot express how important this day is to us and what it represents. As parents, of a child, who has a fatal disease, we pray everyday that our daughter will be able to live a full and long life.
With love and tremendous gratitude,
Ian, Jenny, Tristan, Scarlett and Sawyer
P.S. Your donation could double in size if your employer has a charitable matching gift program. To see if this is an option for you, please speak with your HR representative or visit www.matchinggifts.com/cff.
The Great Strides Cystic Fibrosis walk was moved from Stamford, CT to New Canaan in 2015. In previous years, it was held in Shippan, where very few people were able to witness the walk and overall turnout was low. Before the move from Stamford “Team Sunshine for Scarlett” started out as a team of 8, then grew to 60 then over 100 teammates, which was very impressive considering that year it was pouring rain. I can remember driving up to the parking lot the morning of the walk and my husband saying, “Jenny, do not expect anyone to come in this weather.” Sure enough everyone that said they were coming was ready to walk and left me speechless as every walk does by the loving support of our friends and family. We became a larger team primarily because that same year my son was attending New Canaan Community Preschool and they knew of Scarlett’s disease and stood behind us 100%. For the past 5 years, NCCP has supported us every year as we have graduated two children from that program and have one more to go.
Once we moved the walk to New Canaan our mission took off and our team grew to over 350 people. As a mother of a child with a fatal disease, it is my job to do my best to educate and push forward the need for a CURE. May is an extremely hard time for me, as I am reminded that I need to reach out to my community and ask for their time and generosity year after year. Scarlett and the thousands of others with CF don’t get a break from living with this disease so I won’t take a break in asking for help until it’s cured.
It’s hard to put into words the emotions that run thru me the morning of the walk. It is by far my toughest emotional day of the year, as I’m reminded that I’m walking for my very own little girl who’s dreams will be to live a long and healthy life. On the other hand, I arrive at the New Canaan High School Parking lot only to witness a “Sea of Yellow” and realize just how fortunate we are to have this amazing community behind us and supporting our cause…I’m not alone in this fight! As we gather in the parking lot for our team picture, my tears can’t help but fall down my face, not from sadness but from the joy of seeing all these families being their for my Scarlett!!! It’s not until you walk for a loved one do you realize the significance of attendance from your community.
Last year the walk raised $127,979, and we would love to see this number grow and get more companies and families involved in our movement. The power of people makes all the difference in the world.