Great Strides walk for Cystic Fibrosis

[amyren]

My darling nephew (now 20 months) was diagnosed with Cystic Fibrosis at 3 weeks. Since his diagnosis my family has learned a lot about this devastating genetic disease. Next month we are participating in the Great Strides Walk for Cystic Fibrosis here in Atlanta. It’s our team’s second year with the fundraiser. I know that Great Strides hosts walks all over the country so I was wondering if any of you DISers have ever participated. Don’t worry I’m not gonna hit you up for money I was just curious about CF walks in other parts of the country.

 

[PollyannaMom]

Yep, we have them here in New England! I walked in one a few years ago. It was a very pretty route near the ocean.

 

[CleoPahd]

My husband has CF, he'll be 35 this summer, so know that there is lots of hope for your nephew with all the new advances in medicine. I have done the Great Strides walk a few times and really enjoyed it. Actually, I just went to look into signing up today and the town where I usually walk is not sponsoring a walk this year, so I guess I have to go to plan B and find a new town. Good luck with your fund-raising!

 

[laurie31]

We have walked in ours several times. We had a very dear friend with CF who was in our wedding. We named DD#2 after her. She sadly passed away in 1994. There is so much more hope now, but so much still to overcome. The CF Foundation is a great organization to support. Donations do go towards research for improving quality and length of life, and of course, the search for a cure.

(I am not affiliated with CFF in any way- just wanted to point out it's not a shady charity like some, where only a small percentage of the contributions actually goes for the "cause" - so if anyone wants to walk in their local Great Strides walk, or support someone who is, they can be sure their money is being used wisely and not just lining someone's pockets. )

OP - I wish your nephew all the best!

 

[amyren]

(I am not affiliated with CFF in any way- just wanted to point out it's not a shady charity like some, where only a small percentage of the contributions actually goes for the "cause" - so if anyone wants to walk in their local Great Strides walk, or support someone who is, they can be sure their money is being used wisely and not just lining someone's pockets. )

OP - I wish your nephew all the best!

Yes, The CFF is a fantastic organization. My brother & sis-in-law do all kinds of events with them. They were actually named volunteers of the year for the GA chapter. The Great Strides Walk is just one of MANY fundraisers they are involved in. Basically my nephew got his diagnosis and they immediately dove into fundraising! It’s kinda the only way to fight back.

The good news is the fundraising efforts are paying off! There are some amazing advances "in the pipeline".

 

[Octoberbride03]

These are awesome. I used to do the 10k walks in high school and college, but haven't since I got married. I knew someone who worked a few CF kids and she wound up doing so much she was on a local CFF Board for awhile. I don't know anyone down here who is associated with CFF. We walked in a few different parks over the years. My favorite routes were ones with lots of hills We'd have joggers on the route and I'd beat them up just by walking Usually a nice picnic and some door prizes after the walk. And if memory serves I believe its about 95-98 cents for every dollar that actually goes into the research. So that is huge. Small fundraisers really are better. MDA has the big telethon every yr but they spend big on overhead with that thing too.

 

[Octoberbride03]

BTW OP whoever the Dr. is for your nephew do NOT EVER drop them. I personally have never heard of a baby being diagnosed that quick. Simply because some Drs like to rule out everything under the sun. Or symptoms don't appear that quickly. I wish your family the best of luck in his treatment.

 

[amyren]

BTW OP whoever the Dr. is for your nephew do NOT EVER drop them. I personally have never heard of a baby being diagnosed that quick. Simply because some Drs like to rule out everything under the sun. Or symptoms don't appear that quickly. I wish your family the best of luck in his treatment.

In 2008 hospitals started screening all newborns for CF. I'm not sure if it's just in GA but it is now one of the tests associated with the newborn heel-prick. We are thankful that he was diagnosed early because he immediately started meds and treatments. My brother & SIL are very proactive. He always takes his meds & enzymes and they are very strict on his breathing treatments and "vest" time. So far he hasn't had to stay in the hospital

 

[AshleyW]

Have fun on the walk! DF and I had a friend with CF who passed away in 2004. We do the Great Strides walk every September.

 

[amyren]

yay! I reached my fundraising goal. Whew, I hate asking friends for money, even if it's for a really good cause. I put my goal at $500 and so far I have $525

 

[pipersmom]

Piper has CF and we have walked every yr until the past two, she's been hospitalized either right before/during the walk. CF is what led me to the boards, I was reseaching for her wish trip! Newborn screening is now nationwide, every state includes it in the heel-prick testing