Hello!! Thanks again for taking the time to consider Great Strides as a charitable donation of money and/or time. The walk is coming up on May 18th at 9am in Lexington (Legends Field/Whitaker Bank Ballpark) and we will be there again this year to raise money for our Laynee and all the other CF patients who are still fighting for a Cure Found. Below is some of the general information about CF and the walk but I wanted to give you an update on our girl and our CF year.
This year the CF Foundation tackled March on the Hill and Leanna and I were privileged to attend and advocate for CF patients. This was a great March on the Hill and we received encouraging responses to ensure access to adequate and affordable care. Anyone can be an advocate on the state or national level. If anyone would like to know more about the March on the Hill or the Teen Advocacy Day in the summer just contact me and we will get you on your way.
Laynee did have another polypectomy in the past year and unfortunately looks like she will be headed for another this summer. Last year Laynee was receiving Orkambi which greatly improved Laynee's overall health. She has now been put on Symdeco which is another miracle drug that has been approved for CF treatment due to the constanct efforts of the CF Foundation. And in the last month the Foundation has made even more "great strides" in developing additional medicines for a greater number of CF patients and their individual gene mutations. The triple action drug has been approved for stage three trials and moves CF one step closer to finding a cure.
Our girl is a trooper and never complains about all this medical treatment but I can tell you it is no fun for anyone. And our Laynee is a lot healthier than many kids with CF so we consider ourselves lucky in that respect. Some of the parents I met at March on the Hill in Washington, DC have CF kids with medical bills in excess of $30,000.00 per month. All money raised by Great Strides goes directly to research for medications that may eliminate the need for patients to take multiple medicines each day and instead just take one.
Last year we had an unbelievable turnout for walkers and donations and hopefully even more team members will sign up this year. We ask all of you to please attend again this year so Laynee can see how many people care about this fight she is undertaking. While monetary donations are always accepted and much needed for clinical research (new medicines are being approved every year!!), the simple gesture of giving your time is even better. Please join us at Whitaker Bank Park in Lexington and walk with Laynee and her family/friends and other CF families to help make CF stand for Cure Found!!
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. I walk for them and hope you will support me in my 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, I am helping add tomorrows to the lives of people living with cystic fibrosis. Will you join me? Support me by making a donation to my Great Strides fundraising campaign today!
Great Strides is a fun, family-friendly event that raises awareness and support for people with CF and their families.
Please support me!
Help me reach my fundraising goal by donating to my 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.
Important note on Attendance at Foundation Events:
Infections can exacerbate CF symptoms and worsen lung function, so we ask attendees at Foundation-sponsored events to observe the following best practices to reduce the risk of germ transmission:
Regularly wash hands with soap and water or with an alcohol-based hand gel.
Cover coughs and sneezes with a tissue or your inner elbow.
Maintain a safe 6-foot distance from anyone with a cold or infection.
To further reduce the risk of cross-infection, the Foundation’s attendance policy recommends that all people with CF maintain a safe 6-foot distance from each other at all times while attending an outdoor Foundation-sponsored event. All Great Strides walks are non-smoking events.