Hip2Give: Cystic Fibrosis Foundation
I posted this Hip2Give topic yesterday on Hip2Save and was saddened and disappointed when I read all of the negative comments that ensued. The point of these Hip2Give posts is to provide inspiration, hope, kindness, empathy etc. I am re-posting this today (with all the comments removed from yesterday) with the hopes that you will only leave a comment if you have something positive or uplifting to share with other readers. Let’s all follow the saying “If you have nothing nice to say, then don’t say anything at all.” Thanks for your cooperation.
Over the last few months, I have received many emails from readers nominating wonderful charities and organizations to be highlighted on an upcoming Hip2Give post. Although it’s always difficult to decide what organization to highlight next; I was so moved by an email and video sent by reader, Sarah, that I knew I had to highlight Sarah’s story today…(you may want to grab a box of Kleenex before watching the video)
Our baby girl was born after 2 miscarriages and is the absolute joy of our lives. When she was 3 weeks old, we got the call that she had Cystic Fibrosis. This is a devastating, life shortening disease. Below is a video that I have made of her story.
[youtube=https://www.youtube.com/watch?v=NE15O35Qgx8&w=480&h=385]
**If you can’t see the video, then go here to watch it.
What Is 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 and stops natural enzymes from helping the body break down and absorb food. Today, advances in research and medical treatments have enabled many people with the disease to live into their 30s, 40s and beyond.
Cystic Fibrosis Facts
* About 1,000 new cases of cystic fibrosis are diagnosed each year.
* More than 70% of patients are diagnosed by age two.
* More than 45% of the CF patient population is age 18 or older.
* The predicted median age of survival for a person with CF is more than 37 years.
The Cystic Fibrosis Foundation
Since 1955, the Cystic Fibrosis Foundation has been the driving force behind the pursuit of a cure. The mission of the Cystic Fibrosis Foundation, a nonprofit donor-supported organization, is to assure the development of the means to cure and control cystic fibrosis and to improve the quality of life for those with the disease. It has received a four-star rating for sound fiscal management from Charity Navigator, the largest independent charity evaluator in the United States and is an accredited charity of the Better Business Bureau’s Wise Giving Alliance.
How Can You Help?
* Volunteer with the Foundation and help add more tomorrows to the lives of those living with cystic fibrosis.
* Donate to the Foundation and support efforts to enhance and extend the lives of cystic fibrosis patients and ultimately to find a cure.
* Participate in one or more of the 1,200 fundraising events across the country throughout the year
* Raise awareness about cystic fibrosis and encourage others to join the fight.
* Learn more about these and other opportunities at www.cff.org, or call (800) FIGHT CF.
(Thanks so much to Sarah, Virgina Blue, and the rest of the family for sharing their story of courage, determination and love with us…let’s all raise lots of awareness and money for CF!)
Thank you so much Collin for posting this video. Sometimes we all need reminders how lucky we are and that it is not always about us. The video of course, had me in tears, but worth it. My prayers go out to anyone going through this or knows someone, who is going through it. I hope you will continue to post other things that are important besides saving money. Thank you for all that you do!
Collin, you are so awesome. Thanks for reposting this. I have 2 friends with CF. One is 35 and has done amazingly well. The CF Foundation is a great group for everyone to support.
it is amazing how certain things happen at certain times. we were informed today that a close family friend’s son (who has been fighting CF for years and has had a lung transplant) is not doing well and will probably lose his battle soon. It’s very hard to imagine losing a child. I really appreciate you posting this and hope it will help bring awareness to this terrible disease.
I think this post is awesome! We should all be reminded every now and then how lucky we are. For you to post something like this is great, because so many people look up to you and respect your advice. I would like to see more Hip2Give posts.
thank you for posting this everyone takes for granted things and this does not need to be forgotten.
was not able to watch the video (stupid computer!) but cannot even imagine what someone could have written negatively about this? I have a close friend that lost her cousin to CF shortly after she was married (she appeared on A Wedding Story) and returned from her honeymoon. This is a very devastating disease and the support for research is very important. They have many new tests they can do during pregnancy that will allow immediate treatment after birth that can help the disease victim have a much longer and healthier life. Shame on the people that don’t have anything nice to say!! thank you collin!
I remember watching that exact episode! What a small world. I know a 2 twins who came to my genetics class talking about cystic fibrosis. It’s great that everyone is becoming more aware of this and helping out.
Collin, I am so happy to see your post on CF. My aunt had CF back in the 70’s and lived to be 27. Her best friend who I still talk to and has CF is ALIVE and WELL and is around 60!!!! She is one amazing person. When I went to talk to my doctor about getting pregnant they did a test to see if I was a carrier and I was, my husband then was tested to see if he carried the gen and lucky he was not. CF is something I think more people should be aware of and support.Thank you for helping take a stand.
The video was beautiful. I had tears in my eyes the whole time. I’ve been blessed with 6 beautiful children. (one is special needs) bu it’s not life threatening. This video made me think how lucky I am. But that family is blessed ny having Ginger what a pretty little girl. I pray we find a cure in her lifetime. May she live to be old and gray with grandchildren. May you be blessed with many more firsts. There are many out there who care..
Thank you for this sweet comment. That is my dream for Ginger. <3 Sarah
My mind is turning to think why anyone on this site would write anything negative as well..however, I would like to encourage Ginger’s parents to CONTINUE to be the assertive advocates that they obviously are for Ginger. Use whatever sources are available to allow you to care for your daughter. Remember to keep taking those pictures and maybe take time to send some of those in to contests….they are adorable. Someone has some talent there. I will say a special prayer for your family tonight. Take Care
I am the mother of a special needs child! While he is high functioning, I have spent many a night in a cold hospital room! Freindship with other parents was treasured! To all of the moms and dad’s I pray for you as I have walked in your shoes! The best advice I can give is to love like you’ve never been hurt and don’t let your praying knees get lazy!
So Very Beautiful….(sniff sniff) !! Thanks for sharing :))
Thankyou so much for posting this on your website. I adopted two children a number of years ago that have CF. Every day we count our blessings that they are a part of our life. My family, like this one, counts the days until a cure is found.
I had no idea that CF was even a disease until you shared this yesterday. I can’t imagine how hard it is to see your children suffer so.
Thanks for letting the rest of the world know about CF, and what we can do to help.
We too have a daughter w/ CF. Shes 6 & doing very well. We know Sarah & her family thru CF Foundation. It is awesome that you published her story/video. Our CF’er’s need all the awareness they can get!
This family’s courage is truly inspirational. Thank you for sharing this video and information. I was not very informed about CF before seeing this post so I appreciate you taking the time to bring it to our attention. My prayers are with Ginger’s family and others fighting this terrible disease.
THANK YOU SO MUCH FOR POSTING!! I never really knew what CF was just heard of it. My prayers are with Ginger and her family, its a constant reminder life is a blessing and all the little stuff doesn’t really matter.
I was in tears as I watched this video. My third child was born in February and the video made me realize just how lucky and blessed I am to have three healthy children. Anytime babies are sick or in pain it just breaks my heart. I commend this mother for her amazing efforts and hope that I would have the courage to do the same.
Thank you Collin for posting this! Our son (9) has CF. We’ve spent alot of time in hospital rooms, including a three-week stint two years ago and another time when he almost died. But thanks to all the wonderful research and awesome medical care at OU Medical Center in OKC, our son is doing wonderfully. As long as we continue his daily medical treatments, we can expect him to live a LONG, FULL life. And we hope and pray for a cure!
How touching. My prayers are with this family and all the others that are fighting these battles. I am so blessed to have a healthy 2 year old daughter and this video had me in tears from the first second because I can’t even imagine how devastated I would be if I was given the news about my child. But what a wonderful family they are having the strength to fight for their little girl. Best thoughts and wishes to them and to all of you who are going through similar things.
How could anyone say anything bad about someone suffering with a chronic disease that puts the person in and out of the hospital for their entire life. Feeling air hungry because you can breath and no feeling well because you can’t properly digest, doesn’t sound fun to me. I hope they find a cure for this and so many other childhood diseases that I see in the hospital because who would want to see a child suffer.
Who could possibly have anything negative to say about this video or topic?! I commend you for standing by a cause you believe in! I must admit I didn’t know about his disease. Knowing it now, I can’t imagine my child or any child having to go through this. I hope they find a cure as soon as possible. Once again, thank you for standing by this and many other causes no matter what anyone says!
Thank you for posting this. I hope to see you post more about other awareness since there are so many out there.
Collin,
As an avid reader of your site (Your site is the only coupon website I visit daily) I want to thank you for supporting such a worthwhile cause. It is truely inspirational to see that you use your reach to include such special foundations such as Cystic Fybrosis Foundation. Ginger and her amazing family are such an inspiration, my prayers are with them and I wll definilty contribute to CFF.
Thank you so much for sharing this!
This video brought me to tears yesterday! I cannot imagine adding insult to injury by being negative about this little darling’s video! One of the joys of being a frugal person is saving money so that you’re able to give to others through foundations or other means… This cause definitely merits our attention and our resources. Good work, Collin! Keep it up.
Beautiful baby. I worked on a Pediatric Unit with children afflicted by many different diseases including Cystic Fibrosis. The kids were well known to staff as they have to be hospitalized so many times for treatment. At that time their life expectancy was very short, teenage years I believe. Devastating disease as they suffer to simply take a breath with constant coughing. Bravo Collin for bringing this disease to the attention of your readers, as well as the other charities you have mentioned. Anyone criticizing that needs to apply for a heart transplant.
I am glad you reposted; I can’t imagine what the negative comments were. And I’m sorry you have grumpy people who follow your blog. But I lost a friend to CF right after high school, and my husband’s good friend died of CF 5 months after getting married. It is a terrible disease, and it’s so hard to watch someone suffer with it. As a family we do the CF Walk every year and try to make a small difference. Thanks for highlighting this disease that doesn’t get much attention because there aren’t millions of sufferers.
It was mostly political stuff and I agree totally. I was dissapponted to see that the comments had to be removed. This was such an inspiring video and isn’t that one of the most beautiful babies in the entire world? My prayers are with baby Ginger and her family.
I did not read the comments yesterday, but WHAT IN THE WORLD did people have negative to say? sheesh. I can’t believe it. it is a beautiful story and we are certainly praying for a cure for this sweet little girl!
The negative comments were off topic…
I saw the post yesterday but am glad I missed all the negative comments yo were talking about. I have a child with Cystic Fibrosis. She is 14 and an amazing girl. Thank you for calling attention to this disease. We are thankful for all the work the Cystic Fibrosis Foundation has done and will keep doing. Hope all who see this will give to this organization.
My little boy was diagnosed 3 different times (2 sweat and 1 genetics test) that all came back postive for CF. From the age of 3 days to 2 years he had under gone many surgeries including G-tube (feeding tube) placement, so he could eat. When he was 2 a friend prayed with us over him, a month later his feeding tube was taken out, he is now a typical 6 year old with no signs or symptoms (except scars). And his tests all come back negitive now!!
Has anyone seen sisters Christina and Ali on Americas got Talent? They have CF and were told that they would never be able to sing, but they are really good at it! Thank you America for voting them on to the next round!
I seen them they are my favorite. This video had me in tears it was so touching.
I can not even imagine what negative things anyone could have said about this post…I am so glad I missed them! What a wonderful video. Thank you for sharing this and making awareness for something not a lot of people know about, including me! My heart goes out to these amazing families dealing with such a devistating discease!
This post really meant a lot to me. I grew up with 2 cousins that were my age with CF. The breakthroughs that have happened since we were little is amazing. There is so much hope for those who are now fighting. It astonishes me that there is no government funding with how many Americans alone are effected. The CF foundation is a true God send for the families of the ill. They offer so much support and give them a way to fight back. The video had me in tears. This family will definitely be in my prayers.
Over the years I have donated to the Cystic Fibrosis foundation many times.
The first death I ever recall dealing with was the death of my friend. I was 10 and she was 11. She had CF. More recently another friend of mine lost his granddaughter to this disease while she was waiting for a lung transplant. It is a horrible disease. My heart goes out to all of those that are affected by it and a big Thank you to Collin for bringing this to everyones attention.
Beautiful!
This video was amazing. Truly eye opening. Keep the posts like this coming!!
This was one is particularly close to home for me. My 5 yr old son has a very good friend who has CF-to look at him you would never think anything is wrong-perfectly normal, happy child. But when you talk to his mom about what a normal day entails for him, you realize his life is not normal. Breathing treatments, for hours a day, did you take your enzymes?, limited ability to participate in outdoor activities like soccer and swimming because of the irritation and infection. No sharing food with ANYONE (c’mon, when you are a kid, that when you are suppossed to get away with that kind of stuff!) dont drink out of public water fountains. This is a really sad thing, and sometimes I look at him and my heart breaks because I know his future will be tough, so thank you for posting this and helping us to all be more aware-because until my son became friends with this boy, I never really even knew for sure what CF was.
It saddens me so much to see that there were so many negative comments. I have an e-friend, a very close friend, who’s daughter was born on the same day as mine. She has CF, and I cannot even begin to imagine what my friend has gone through.
And here, read this story. https://www.notsobrightandshiny.blogspot.com/. This mom just lost her 7 year old, yes SEVEN year old child to CF. Her words are powerful & amazing.
Thank you Collin for posting this.
oh my gosh, thank you so much for posting this one also Mary, it was so hard to keep reading, i dont know anyone that suffers from this but this story was like reading a friends journal, sometimes i get down and think its so hard to take care of my 3 young girls, and not to mention try to show up everywhere on time, but this women just made me value my life, how easy it is, how its just a pinch of my effort to do compared to this mothers 7 year battle of life every single day ! thank you !
Collin, thank you for highlighting this foundation and the help it brings to families who are caught in the midst of a terrible disease. Two and a half years ago when my middle son was born, our pediatrician seriously believed he had CF after his failure to thrive and several other conditions… and I can’t describe how my heart felt when she said those words. I praise the Lord each and every day when I look at my now healthy son that we did not have to walk that long road, but it also helps me remember to pray for the families that do.
Thank you for posting this Colin. The CFF is very significant and meaningful for our family. One year ago almost to the date, our pediatrician called with the news that one of our twin newborn daughters had tested positive as a carrier for Cystic Fibrosis and that further testing was required to determine if she had the disease. To say were were beside ourselves is the understatement of the century! We ran around seeing doctors, having sweat tests performed and our own blood drawn for genetic testing. Once we learned more about what CF is, my sister-in-law became suspicious that our two year-old niece, who had had heath problems since birth, might have cystic fibrosis. (The gene mutation came from my husband’s side of the family.) Though Rhylan turned out to be merely a carrier, Leah was diagnosed with CF within the week. Our family was devastated to learn that she has to live with CF, but at least now her doctors know what has been ailing her all this time can treat her disease appropriately. We participated in and raised funds for the Great Strides walk for the first time this past year and will continue to do so every year as the only funding the foundation receives is from donations. These parents have the right attitude towards fighting this devastating disease and their determination to find a cure is inspiring! Please help find a cure for Cystic Fibrosis! Here’s a link to my sister-in-law’s Great Strides homepage, where you can learn more about Leah’s story and how you can help. https://www.cff.org/Great_Strides/KathyNordquist
We don’t have much right now, but I’ve donated $5 and posted on facebook in hopes of continuing to spread the word. Thank you for posting this!
Thanks for sharing this story with us. I know of a grown set of twin sisters where one of them has CF. She’s doing well, but life is challenging for her. God bless all of you out there who are dealing with this in your family.
I lost a friend to CF in May and she has two siblings still fighting the fight. She never let it stop her from living every moment of life. Thank you, Collin for raising awareness. Most people haven’t heard of CF and haven’t got a clue what it means for the families of those afflicted.
What a touching video 🙂
My mom works with a very sweet women that is in her 30’s that has CF. She is married to a wonderful man that also has CF and they have a great life together. She works as a Occupational Therapist for children in Elementary schools and also loves to act on stage and appear in plays!
Keep your hopes high and anything is possible for your angel!
Thank you so much for posting this video. It brought tears to my eyes. I don’t have children myself but just the thought that my nephews or niece could have easily been affected by this disease is heart wrenching any child for that matter. I was saddened to read that anyone would have anything negative to say about this post. I mean really???? I just can’t fathom that. But none the less thanks again for bringing awareness to this disease.
My son is only five days older than the beautiful little girl in this video and I can not imagine the difficulties that this family has gone through. My mother’s best friend was diagnosed with CF and passed away shortly after graduating from high school. It’s a terrible disease but I have hope that there will be a cure and that Ginger will have a healthy and happy future. My prayers are with you and your family and I will be making a donation to this cause.
Thank you so much.
Yeah, so happy for the repost. I was sad when I read all the negative energy yesterday too. I’m refreshed to see all the postive vibes going out today!
Yeah for you and standing up for what is right and good and shame on those that do not and did not yesterday. My husbands best friend growing up had CF and we named our first born after him. He has been a true inspiration of how to love and love life. I never did get to meet him as he passed away when he was a junior in high school…before I met my husband. I look forward to meeting him on the other side. 🙂 Thanks for all you do!
https://onedaywewill.net/VirginiaBlue/
So sorry to hear there were negative comments. I am glad you deleted them, but it makes me sad that Ginger’s parents might have seen them. One of my close friends has CF. She’s 28, and has a healthy two and a half year old boy that keeps her very busy. I hope that gives you a bit of hope for little Ginger. Great name by the way!! She is a real cutie and is blessed to have such wonderful parents.
Thanks for posting this Collin! My heart goes out to this family…I certainly hope that they are able to see a CURE for their daughter within their lifetime!
Also, I’ve been following your blog for a couple of months now and hadn’t seen a Hip2Give post before this one (fortunately I missed the negative comments yesterday). This is a wonderful idea and am so glad to see this here! Thanks so much! What a wonderful way to help raise awareness and assist with fundraising for worthy causes!!!