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 for sharing this with all of us!!!
I just want to say, personally, I think it’s awesome that you are bringing awareness to such a cause. My son was tested, and lucky enough to be negative, for this disease. My heart goes out to all who are dealing with it. Good for you, raising awareness. Shame on those who wanted to overshadow that with negative comments.
Shaming others doesn’t fall into the category of “If you have nothing nice to say, then don’t say anything at all.” Nor does my comment 🙂
LOL … nuff said! lol
Amanda – Why do you feel shamed by this little girl’s story. If you don’t want to help don’t help. Simple.
Thanks Collin for all your hard work and bringing awareness to this illness!
She was talking about what Jennifer said.
As a medical professional, my prayers go out to all affected by CF. Colin I admire your thoughtfulness in requesting that comments be positive!
I have several friends and acquaintances who have been diagnosed with CF. I pray they find a cure!
thank you for bringing this to everyones attention! As a mom of a son with CF it is so wonderfull to see people like you bringing this to light.
thanks also for deleteing the stuff from yesterday!
I can’t believe anyone would leave a negative comment about this! I think it’s great – I have had a few people in my life affected by CF and I have always been a big proponent of increased awareness and funding for that cause.
Thank you for sharing!
Wow – I saw this post when it first posted and there were only a couple comments that were not negitive.
I am shocked that there were any negitive ones. I am fully aware that Collin allows her comments to be open to how we really feel and unless it is extreamly vulger, she leaves comments up; even if they are negitive.
But, come on people – have some boundries and compassion. I hope for the best for this family and anyone who has a child in their lives that is ill.
exactly how i feel.
I am so glad you posted this yesterday! Our best friends have a 4 year old, precious little girl with CF. The post from yesterday just reminded me that every little bit helps and prompted me to call our local chapter of the Cystic Fibrosis Foundation to see how I can volunteer. I think it is such a shame that people are so negative…I mean really?? I so appreciate your heart in this and just want to encourage you…thank you, Colin!
Thanks for posting this again. I was about the think I was going crazy knowing that I had just seen it yesterday but couldn’t find it today to actually read it. Good to know I’m not losing all of it just yet! LOL
I have a friend who’s husband was diagnosed with CF when he was in his early 30’s. What a great charity to raise awareness for.
God bless this child and others afflicted with this disease. My child suffers from severe Rheumatoid Arthritis and I have been amazed at how negative others can be about it. My daughter is now a teen and trying to have an illness and deal with other teens is more than anyone should have to bear at times. Sadly, lots of people don’t understand until they are directly affected in some way by an illness. Thanks Colin for sharing this story and I am looking forward to more like it in the future. I think public awareness really helps educate people about these diseases and how the patient as well as their loved ones are afflicted.
Thanks Collin for not giving up on getting the message out.
Wow! I never read the comments yesterday but i did watch the video and i thought it was very sweet. I am shocked that there could be anything negative to say about that. I too am a mom of a child with a disability and i really hope people learn to have more compassion for each other and children who did not ask to have these things. I hope they can raise lots of money. I hope the government opens its eyes and starts helping to fund this research so nobody has to suffer. I have a friend who lost her little brother to CF and it was horrible. People please have compassion, and if not, say nothing at all.
Thank you for re-posting and thank you to Sarah for sharing her story.
Things did get quite out of hand yesterday. Thanks for deleting and re-posting!
I detailed a bit about my brother John in yesterday’s comments. CF took him away from us last year at the ripe age of 19. He was the light of my life and remains an inspiration for many to this day. He was an incredible person and I hate that CF took his life and didn’t allow him to develop into the amazing, caring, and influential person I know he was destined to be.
To anyone who sees this video, please consider making a small donation of money or time to help us kick CF’s big stinky butt to the curb. 🙂
I did not see the original post, but I will say to anyone that had a negative comment about such a heartbreaking disease “What goes around comes around” so you might want to watch what you say negative about others.
Thank you for posting this awesome video and cause! That video sure did touch me as cystic fibrosis affects a lot of people and goes without a cure. I would love to get involved and help in anyway I can. Your family is in my prayers!!
Thanks for the CF posting. As a mom with a daughter who has CF, helping people become aware of the disease is a big step. The more we know the more we can help! Thanks again, it made my day!
She is a beautiful little girl and I wish for the best for her and her family. Thank you for bringing awareness to this condition.
I watched the video yesterday with mixed emotions. I was happy (what a beautiful baby and parents) and then I was sad (all the pain this little one has to endure). I was glad that you brought it to our attention and was ready to help out in any little way. Thanks for the eye opener.
I watched this yesterday at work without sound (no speakers), and I cried. I wanted to send it to my husband, but I knew he’d cry. So I waited until later in the day, and then it was gone. I’ll admit, I was SO mad, felt upset Collin had to remove the posting, and worst of all, that Virginia’s message had been silenced. I came home and was able to find it on You Tube so I could share it with my husband. I cried some more…
Collin, thank you for giving us a second chance to give Virginia and others with CF a chance for a cure.
What a beautiful little girl! Thank you for sharing her story and thank you Collin for raising awareness. Saying a prayer for that sweet baby and everyone else battling this disease.
My 5 year old nephew as Cystic Fibrosis. When I called my sister-in-law to tell her about your post, she was really touched. This is a terrible disease that they actually have some hope of curing. It is a great cause! When Connor was a baby, my father-in-law planted a garden of 65 roses because many children have a hard time saying cystic fibrosis, they say 65 roses instead. So everytime I see roses, I think of my awesome, fun-loving totally boy nephew and his amazing parents.
I glad you reposted this. Because I begin to read it and I always look at the comments.. and.. well my heart tuely goes out to the parents. It was a pleasure to see this story and alothough right now I can not donate money, you educated me on something new. With this new information I am sure we can figure out how help some kind of way! God Bless everyone
Thanks for getting the message out and keeping it positive, Collin!
I watched this video yesterday and I watched it again today and cried both times. I didn’t read any of the comments yesterday but in my mind I cannot imagine what people could have said about this. An innocent baby girl has a horrible disease. I wish the best for this family and anyone else that has a little one that is sick.
I think I’ll have to skip the video, I recently had a miscarriage and my emotions are still pretty wacky. As a medical professional, I can say that watching someone struggle to breath is horrible, and I can’t imagine what it must be like for the person suffering from a respiratory disease, particularly a progressive one like CF.
Thanks for highlighting this topic, I love that Hip2Save puts frugal living and charitable living in the same arena!
Just so people are aware… The negative comments were not about cystic fibrosis or anything having to do with it. Someone made a comment about government funding going to a certain “social issue” instead of CF and how they thought that was wrong.
I don’t think anyone could ever or would ever have anything negative to say about CF, Sarah, Ginger or anything that this post really was about. Didn’t want Hip2Savers to have a bad name! Hope it’s okay that I cleared that up…
Yes, after “said comment,” chaos ensued!
I read the postings but they are really unimportant except what you clarified here about them here.
My heart goes out to all who are dealing with CF and all other life threatening diseases. Good luck with your mission and hope it comes to fruition soon.
thanks collin
What could someone have to say negative? Children and adults are sick and in pain daily from multiple dieases and illnesses, what gives anyone the right to complain and gripe about someone discussing a problem facing others. I didn’t read the comments from yesterday but can’t possibly understand why this would offend them. I hope this posting helps to raise awareness and helps find a solution to the affecteds needs.
I would be one of the first to be “sickened” by those who make negative comments about something so sad and from reading these posts today, obviously, the negatives from yesterday had nothing to do with CF. BUT Robin’s comment, “what gives anyone the right to complain and gripe about someone discussing a problem facing others” is the fact that we live in a country that allows freedom of speech and expression. To take that right away from others makes us no better.
I did not see the comments from yesterday but I can not imagine what negative things could be said about this disease after watching the video. I am still crying, she was born the same month as my twin boys and this story truly touched me. How brave these parents have to be for their children, and how tough the individuals must be throughout their life amazes me.
My prayers and thoughts are with this family and all the other families that face the road of uncertainty ahead of them. Stay positive! (still crying)
Thank you! 🙂
Thanks for sharing this post. I wasn’t aware of how CF affects kids and even adults. I have two little girls that I sometimes take their health for granted. Seeing posts like this makes me realized how blessed I am and makes me realize I should give back to help.
I sent this on to friends,, some of whom are unlucky enough to be personally affected by CF. One of my friends has volunteered for years at a CF Fundraiser walk,, and her co-worker has just been voted in as the president of the CF Association in Utah… Rick and Vickey both say THANKS!
everyone can keep helping just a little,, and mabye we can wipe out these terrible wastes of Precious Lives!!!!
I love this post!! It is great for people to share their stories. By the way Sarah your baby is sooooooo cute!!! I love all of the pictures you have taken of her. They all came out really nice.
I also didnt see the original post, but i just finished watching the video and cried from start to finish! That is soooo sad!!!!!! There shouldnt be any negative comments about this. This family and all other families suffering with this awful disease derve nothing but POSITIVE words and prayers!!!!!!!!! So, good for u collin!!!!!
Good for you Collin, for sticking to your guns and being so outspoken about a cause that you believe in. I didn’t happen to read any of the negative comments from yesterday but I’m guessing that they were upset that their charity wasn’t highlighted. People need to just be thankful that you, someone of such great influence, is willing to use your popularity for a cause that is so much more important than saving a ton of money on groceries or getting a great deal on a pair of shoes or scoring a free dessert, etc. Collin does so much for us and we should all be thanking her for the time she spends helping us to save a buck and make our lives a bit easier. And she should be commended for bringing light to something that people are struggling with. I think it’s all too easy to forget that there are people out their in the world who have it so much worse than us. Thanks again Collin for being the voice for others who are just trying to get their cause heard.
I was just a young teenager when I read “Alex: The Life of a Child” by Frank Deford about his daughter who died from Cystic Fibrosis. It made a huge impression on me, not just in knowing about the disease but opening my eyes to the daily struggles of others. Twenty plus years later, I realize the impact her story made on my sense of compassion for others. I highly recommend this book, and extend my best wishes to the Blue family.
I, too, read this book and saw the movie. very touching, and it stayed with me, too.
I watched this movie too, when I was a little girl. It was to date the most touching movie I have ever seen. Thank you for posting this Colin.
God bless everyone whose lives are touched by someone diagnosed with CF. Condolences to those who have lost someone to CF. Consider donating so we can eradicate this disease from our lives and out children’s lives.
Thanks for sharing this video! My son was diagnosed with CF 4 months ago. I had never heard of the disease before. I’m glad you are making people aware of it. I have hope that my son will live a long, healthy life!
Anna, my sister-in-law has felt great support from the online CF communities. Especially when her son was first diagnosed and we were all in shock. Because he was diagnosed so early he has been able to get the right nutrition and has only had one surgery so far and he’s 5! Anyway, if you need support, I urge you to google some groups.
I appreciate you posting this information about CF. I learned a lot and felt like it increased my awareness of the disease. I’ve really enjoyed the website the past few months and appreciate all of the heads up on deals. I think posting things like this about CF only make the website better! I think a lot of the people that are on the website are parents so I can’t imagine why people would feel the need to make a negative comment about it. Maybe the people posting negative comments aren’t parents… hard to say I guess.
Thanks so much for posting!
HAVE HOPE!! Although his is a very tough disease please have hope that your child can live a great life. Although a friend of mine passed in his 30’s after udergoing a double lung transplant, he was able to graduate, go to college, have the career of his dreams and get married. His bride was fully aware of his condition and prognosis. Yet chose to follow her love and have some great time together. His adoptive and birth parents together celebrated his life and their time with him with over 300 friends at the end. I know as a parent we always want to outlive our children. But short of that he had most of what we wish for them. He passed with a smile. With help of foundation like this one we have the chance to support here this will only get better over time. Hang In there!
What a wonderful positive encouraging post. Have HOPE.
Thank you Sarah for sharing your story. May God bless you and your darling little one! I pray that there will be a cure.
Thank you!
Wonderfully touching and inspirational video. Thanks for sharing it with us.
I just wanted to thank you for posting this and bringing awareness about CF. One of my best friend’s (my college roommate) lives with CF and her brother has it as well. It’s such a tough disease, and one that is often overlooked. Thanks for your post though! It’s encouraging to see others promoting the CF Foundation and encouraging others to give.
Until you have a child of your own who is fighting for their life it is difficult to understand what the parents and family go through to help their children. No child should have to suffer not only from the illness that is robbing their life but also from the misunderstandings of others. I encourage each of us to get to know someone in our communities that are dealing with a sick child or family member and do our best to help them. You would be surprised how far helping with everyday household chores helps these families. Volunteer to make a meal, clean the house, or watch the other children for the afternoon or even caring for the child so mom and dad can have a date. Thank you Collin for posting this again! Sarah, your daughter is truly beautiful and we pray that the cure comes soon!
..Just watched the vid again…its amazing and so is their story. What an amazing little girl Ginger Blue is!
I froze the video so I could copy the link to get to Sarah’s page. Here it is.
https://www.cff.org/great_strides/sarahsampson6603
I can’t even begin to imagine how a person could comment negatively on this post. I was really touched by the video and wish the family all the best.
I worked with CF kids for 4 years as their dietitian and witnessed the struggles of so many families. I also saw how The CF Foundation REALLY is pushing closer and closer to a cure. The fast pace of CF research is amazing to see first-hand and I am hopeful we will see a cure in our lifetime. CFF is a great organization and I highly recommend supporting it!
I can never find negative words to say on top of someone suffered life. How can people be so cruel to other? We all have one life and it’s not that long, we really need to help each other out while we still can.