I've been volunteering with the CFLF Champ's Challenge for several years now and it's been exciting watching the organization grow and help more and more people with Cystic Fibrosis live stronger, longer lives.
A group of hard working people doing what they can to make the lives of people with Cystic Fibrosis better. Very impressive.
My daughter loves to dance she has CF- She wanted to join a company 30+ miles away from home and try and study 30+ hours a week. It was expensive and you had to attend a summer camp and audition to be accepted. She was just 14 years old. She had been in the hospital and talked with her Dr.'s about whether or not she would be able to handle the schedule with school and her treatments etc. They encouraged her to try. They also told her about a nonprofit Cystic Fibrosis Lifestyles Foundation whose mission was to support kids with CF in their journey towards a longer and healthier life, specifically encouraging physical activity. She wrote a grant application and low and behold she was granted the money to attend camp. Armed with the support of CFLF and the encouragement of her Dr's she began dancing with the team. She became an interacle part of the group winning awards, performing for the community, fundraising events and the list goes on. When she was in her Sr. year of High School the group made it on the TV show America's Got Talent, the show is based on getting America's vote for the success of the team on the show. CFLF mobilized the CF community they voted, they sent my daughter notes of encouragement, admiration and hope. The team came in second but my daughter came in first, first in her heart, she was humbled, encouraged, motivated by the CF community to continue to make a difference for all those living either with CF or anything that might appear an obstacle- as she said on national television "don't let life’s obstacles get in your way." We say thank you to CFLF and the amazing love, money and support they share with the CF community and beyond!
My sister and my daughter both have Cystic Fibrosis. My sister applied for a grant from CFLF a couple of years ago and was awarded their 100th grant. She shared her story with those at CFLF and also shared about her niece (my daughter) who is also living with this disease. In honor of giving their 100th grant, they also gave a matching grant to my daughter so they could enjoy activities together that would help keep both of them active and improving lung function. My daughter applied for the grant again this past year and was awarded the grant again, for which we are so grateful! It has allowed her to participate in activities that we would not be able to be a part of otherwise. CFLF does amazing work for those of us who are directly affected by CF. CFLF deserves more than a 5 star rating!
My 13 year old daughter applied for a grant through CFLF about a year ago. We were not sure what to expect but from start to finish we had a wonderful experience. The grant she received helped her further her love of horseback riding. It allowed her to ride twice a week last winter. For us, it was hearing her say that her lungs felt so good when she got off, that made it so wonderful. The importance of what this foundation can not be stressed enough. To keep children active with cystic fibrosis is so important to their overall development and future. The staff at CFLF truly cares about those affected by cystic fibrosis and they work hard to ensure that each recipient feels special.
Review from Guidestar
My name is Della Anne Gallagher. I am a 21 year old who has lived with Cystic Fibrosis all my life and CF related Diabetes for about a year now. Thanks to the CFLF, i was able to pursue my dream of being a ballroom dancer. Thanks to their funds, support, and encouragement, I was able to do ballroom dance lessons&exercise classes and really excel on the ballroom floor. Thank you sooo much CFLF!!! You truly have made a difference and put a huge smile on my face and rhythm in my feet ;)
Hi my name is Caryn and I heard about CFLF thru our CF Doctors. My daughter Breana was diagnosed with CF at age 6 and to say the least, it threw me and our familly for a loop. But being that Breana who is now 11 years old and an already gifted Athlete, she is a swimmer, a gymnast, a surfer and now with help from CFLF, is on a Diving Team. The CFLF Grant has helped me out tremendously, as I am a single mother of 3 beautiful girls. Breana has won numerous medals and a plaque for 1st place in the last meet of this season and is heading to compete in the Junior Olympic level starting next season. To see her so excited about this new adventure and have a smile on her face every day after practice makes everything we go thru so worth while. We Love you and thank-you for this opportunity. And we plan on being part of your family for as long as you'll have us.
I am Gina Ruiz, I will be 18 in august and I have been most gratefully granted a CFLF Gym Grant for 2 years now. My doctors told me about the CFLF and I decided to apply, and what a wonderful foundation this is. This foundation gives reasons and not excuses for kids to maintain healthy. Thanks to this wonderful program I have been able to stay out of the hospital for 2 years and have kept my cepacia cf lungs to a wonderful 80%. Ever since I got to "re-unite" with the YMCA after years of not being able to attend because it is very costly, it has become a very found place for me to go to. I love to attend my classes such as zumba and yoga. I use the pool to exercise my lungs and use the fitness room/etc to do my other activities to maintain fit. This gym grant not only covered my membership for a year, but I was a well respected client for the next year to come. Erin who I have spoken to on numerous occasions was always so nice, and so respectful and patient. When mentioning how wonderfully lucky I am to be a healthy cf patient after years of struggle, I always mention the CFLF's gym grant and how my success to healthy lungs couldn't have been without them (as well as my meds of course). A great foundation and I hope it sticks around to benefit other cf patients as it did to me!
I am a past recreation grant recipient from the CFLF. I was awarded a grant that allowed me to take ballroom dance lessons. Even though I only took lessons for six months, the skills aquired have allowed me to keep on dancing with no end in sight! It's awesome how this grant was awarded once, but will have a lifetime impact! Thanks CFLF!!
One year ago, I was diagnosed with Cystic Fibrosis, which was a shocker as I was 65 years old at the time. I have two daughters who have Cystic Fibrosis and so I am very tuned in to this disease and all that goes with it. One daughter passed away in October, 2008 at age 26 after two lung transplants and the other, age 33, continues to live pretty well in spite of being sick enough to be on the lung transplant list. She is married and is the mother of two children, 7 and 3. I have a mild case of CF, obviously and know the value of exercise in keeping my lungs clear and healthy. I have seen the encouragement given my girls over the years to exercise and be as active as possible. The grant given to me has allowed me to have a gym membership where I can go anytime and exercise in spite of the heat outdoors and I can go alone, unlike walking out on the streets where my husband feels it's unsafe for a woman alone. I strive to walk at least three miles a day, five days a week. It keeps me feeling well. I am thankful for this grant and use it regularly because it came from others who donated to this cause. I will not waste it! I am very thankful to the CF Lifestyle Foundation for their support.
Review from Guidestar
Great organization. Having CF makes it difficult to earn a decent income. This organization has helped me to be able to have a gym membership along with my fiance'. Thank you thank you thank you CFLF!!
In 2011 we applied for a grant for our daughter who has CF. she chose to use the Money for her and her twin brother to go to summer camp. Being active is a huge priority for her and this grant was very helpful in paying for a portion of the camp bill. We received the money promptly and are incredibly grateful for the CFLF. Thank you!
I have had a great experience with the CFLF. Though it took longer than expected to receive the grant money due to lack of funding, it was well worth the wait. It's a terrific organization that provides resources to help those with CF stay healthy. The staff memebers that I have encountered have been kind, patient, and helpful. It's validating knowing that there is an organization that recognizes how hard we work to stay healthy and because of it, takes away the burden of paying for working out- a very necessary part of our overall health. I enjoy exercising even more now!
CFLF has been a great help. I was always the "poster child" for the CF center I went to every 3 months. I never had to be hospitalized and played aerobic sports all my life. My PFTs were in the 90s until I went to college. Once I left home I couldn't eat as healthy as I did nor as much as I did back in high school and I didn't have the resources to exercise as much as I did in high school. I was not as strict on my health as I should have been. My second semester of college I caught pneumonia in February and spoke to my doctor which was 2 hours away but did not catch it until July. By then it was too late, my PFTs dropped to 32, I lost 18 lbs, and I couldn't walk up a flight of stairs. From then on I was hospitalized almost every 2 months for the past 3 years for CF exacerbations. Luckily 2 years ago I found out about CFLF and decided to apply to help me get the funds to pay for a gym membership where I could start exercising again. After 2 years of going to the gym every week, lifting weights, doing cardio exercises, using my breathing treatments, eating as much as I can, and 2 sinus surgeries, I finally am starting to feel like I once use to. I am running on the treadmills daily, almost stronger than I have ever been, and only 5 lbs away from my weight when I was completely healthy. My PFTs are back up in the 60s and hopefully climbing. I finally feel great again and have the faith and determination I need to work hard and live a long healthy life. CFLF has given me the funds and resources that I need to reach this milestone in my life and I hope they are able to do the same for others.
Review from Guidestar
The waiting time is long, although I am very thankful for what CFLF has done. Great job, just needs to work faster.
Review from Guidestar
We understand the impact that exercise makes on the quality of life of someone with Cystic Fibrosis. Our daughter takes dance as her activity and receiving this grant was a tremendous blessing in assisting with our daughter's dance tuition. We feel very lucky that she was selected for this grant. Constructive feedback: The application process is pretty straightforward, but follow-up is needed. In our particular situation, quite a bit of time was lost due to lack of communication. Unbeknownst to us, The foundation was waiting on a form that had been faxed to our doctor. Our doctor either didn't receive it/misplaced/whatever, but months went by as we waited to hear if the grant was approved. I left a few unreturned messages with who I thought was the point of contact. FInally found the correct contact, got the doctor's form signed and received the grant very quickly after that.
I have CF and maintaining physical activity and staying healthy are key components for my well-being. I applied for a CFLF grant that would allow me to swim all year long (swimming is one of the best physical activities a person with CF can do for lung function) and I was awarded a grant that allows me to swim and get all the workouts I need to be healthy. I could not have done this without the grant!
I have CF, and a couple years ago I applied for a grant to help me participate in a 900 mile bike ride across british columbia to raise awareness and funds for CF. Without the support of CFLF, I would not have been able to participate. This bike ride was an incredibly meaningful experience for me, and something that I continue to draw strength from in my fight to live fully with CF. CFLF helped make this possible, and I am incredibly thankful to have found them, and to have been a recipient of their funding.
My 9 year old daughter with cystic fibrosis took the time to write a long essay, attached photos and asked her friend to hold the dates for summer swimming lessons. We mailed the grant on March 19th and received confirmation of receipt from the organization in April. Then, nothing until June 26th, which is when I received an email asking to review the charity. I emailed the rep to explain again that we had not received any notice of grant approval. She emailed back with a myriad of excuses and more 'work' for my daughter. They failed to follow through from their end, so now they have decided to push their work her way?! Seriously? Unfortunately, it is too late for the summer swimming lessons she planned with her friend. After watching my child work hard to perfect her essay, check our mailbox daily for 2+ months and make plans for lessons with her friend, I believe it is reasonable for the Director of the organization to explain to her personally, why they failed her. I suspect this error was unintentional, but running a loose organization such as this hurts children. I understand errors happen. However, when we realize we've made a mistake, there are certain cardinal rules we should have learned in kindergarten: Apologize. Take responsibility and fix it immediately. A reasonable priority of a foundation that provides services for chronically ill children should truly have their game together to avoid disappointments such as this. Rule #1 "First, do no harm". Most of us would agree that these children go through more than any one person should ever have to; they don't need these unnecessary hits. I have asked the representative to request that the Director of the organization contact me; no response.
Review from Guidestar
I have CF with a gene mutation. I starting going to lung therapy at a local hospital in my area through my insuance once my insurance stop paying I wasn't sure what I would do. I am happy to say with the help of my CF medical staff they introduced me to CFLF & since receiving a grant from CFLF I can now continue to go to lung therapy. This is a great organization.