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.
Once again Leanna and I were privileged to attend and advocate for CF patients at March on the Hill in Washington DC. This was a great March on the Hill and we received encouraging responses to ensure access to adequate and affordable care. In fact Congressman Comer, our representative, joined the bipartisan CF Caucus as the second representative of Kentucky to join. 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.
Part of this year's March on the Hill focused on the need to fund new antibiotics and be ahead of new infections that may arise. As we all know now from the corona virus pandemic, new treatments are fundamental to keeping everyone safe from disease and infection, not just CF patients. But our Laynee is allergic to penicillin so her need is dire. We have had to quarantine her long before the national imposed restrictions.
Laynee did have another polypectomy this year and unfortunately she had a hospitalization for her bowel obstruction syndrome. This year Laynee started on Trikafta which is like a miracle drug for so many CF patients. This triple action modulator has helped reduce Laynee's daily medicines and greatly improves overall quality of life. Many patients have seen unbelievable improvement in lung function from access to this new medicine.
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. Hopefully we will be able to walk this year in May or later if the need be. However your continued support by being a virtual walker or by donating anything you can will 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.
Due to the COVID-19 pandemic, indoor events sponsored by the CF Foundation are strictly prohibited at this time. Scheduled outdoor events must adhere to strict requirements to minimize the risk of COVID-19 infection. Events may be subject to change at any time based on guidance from the Centers for Disease Control and Prevention and local health officials.
IMPORTANT NOTE ON ATTENDANCE AT OUTDOOR FOUNDATION EVENTS:
To minimize the risk of COVID-19 infection, attendees at CF Foundation events must adhere to the following requirements:
Practice physical distancing and maintain at least a safe 6-foot distance from persons outside of their household at all times
Face masks strongly encouraged and expected to be worn in accordance with local guidelines. (Note, children under two years of age should not wear masks due to safety concerns and therefore should not attend CF Foundation events where there is risk of interacting with someone outside of their household.)
Follow basic infection, prevention and control practices by regularly washing hands with soap and water or with an alcohol-based hand gel, covering your cough or sneeze with a tissue or your inner elbow.
Persons with CF should consult their physician before participation in any in-person event as they may be at an increased risk for severe illness from COVID-19. People with CF should maintain a safe 6-foot distance from persons outside of their household at all times.