Riley Marley

Please join our team in support of Riley Marley. The CF community and our village of friends and family have helped us in so many ways over the years. We are so grateful for the support and love Riley Marley and our family receives from everyone, near and far. This years Great Strides Event will be an IN PERSON event on May 14, 2022 and we are eager to begin fundraising. Riley Marley has graciously accepted the honors of being the Great Strides Ambassador again! We are so humbled by all the support and love we have received over the years and we have raised almost $100,000 for the CFF since our first walk in 2015! It is such a great honor and pleasure to be such an integral part of the CFF Mass - RI chapter. We are still following the recommendations of the CFF, CDC and our CF care team at Hasbro Children's Hospital and socially distancing, wearing masks, and the usual personal hygeine that comes along with having a loved one with CF.

We are so grateful for our community and the support we have received in the past and cannot wait to see what 2022 brings for the CF community. All of the funds raised by our team has a direct impact everyone with CF. During 2021 - the CFF and vertex pharmaceuticals made significant progress with the FDA approval of Trikafta for 6-12 year olds. We have been waiting for this day for 7 years! The day it was FDA approved Riley found 2 four leaf clovers and a 5 leaf clover - we knew this was our lucky day! Riley was on the life-changing medication Trikafta for a few months this year and we saw such a positive response from her little body - which would not be possible without the CFF, Vertex Pharmaceuticals, everyone that participated in clincial trials, and everyone that contributes to the foundation. Unfortunately, this medication was tough on Riley's liver and due to elevated liver enzymes we had to stop the medication in November. To say this was devastating would be an understatement. With the reassurance and support from the Hasbro CF Clinic we are confident that if Trikafta is not the medication for her in the future, there will be other treatments for her in the CF pharmaceutical pipeline. It is donors like you that make this CF pharmaceutical pipeline possible, and will eventually have a treatment for everyone living with CF! This brings so much HOPE to patients with CF and parents with children living with CF. Knowing the CFF will not stop until there is a treatment for everyone living with CF brings hope and faith to our family.

Why do we Stride for CF? Well, of course, for more tomorrows with Riley Marley! She is the one! However, she is not the only one with CF. There are approximately 30,000 Americans living with cystic fibrosis. They are moms, dads, sisters, brothers, daughters, sons, friends and co-workers who struggle every day just to breathe. We walk for them and Riley Marley and hope you will support us in our efforts.

Real progress has been made in the search for a cure, but the lives of people with CF are still cut far too short. There still is no cure for this devastating disease. By walking today, we are helping add tomorrows to the lives of people living with cystic fibrosis. Will you join us? Support Riley Marley by making a donation to our Great Strides fundraising campaign today!

In an effort to raise awareness and funds to help the CFF find a cure for CF, we have worked hard to come up with ideas to help promote our team goals. So, this year we are going all out. As many of you know, Riley is VERY active! We have decided that since exercise is so important to maintain proper health with CF, we are going all out! We are challanging ourselves in so many ways starting this winter with our annual ski event -  65 days for 65 Roses - which we had another amazing turn out and are excited for this year's Newport great strides in person event! THANK YOU ALL! And yes, she definitely surpassed skiing / snowboarding 65 days - our ski / snowboard season has ended with Riley skiing/boarding 110 days again this season!

Help us reach our fundraising goal by donating to our "Team Riley Marley" Great Strides fundraising campaign. Your gift will help add tomorrows to the lives of people with cystic fibrosis by supporting life-saving research and medical progress. Your gift is 100-percent tax deductible.