For 30 More

on August 27, 2014

A guest post from Katharine at From A to Pink that is truly worth reading.

Iâ€™m about to turn 30. Big deal, right? A lot of people reach that age, maybe throw a party, maybe complain about getting older, and move on. But for me, 30 is anything but just another birthday.

You see, at 16 years old I was diagnosed with cystic fibrosis (CF), a genetic disease affecting approximately 30,000 people in the U.S. for which there is no cure.

When I was born in 1984, the life expectancy was just 25 years old.

Even 13 years later, I’m still a long way from fully dealing with what it means to have this disease and the implications it has on my future. The hardest part has been managing the disease as an adult. With 2+ hours a day of treatments, constant doctorâ€™s appointments, and a lot of unanswered questions, it takes its toll â€“ both physically and emotionally.

But I am so very lucky. This year my husband and I will celebrate our second wedding anniversary, I have a job I love, and I am surrounded by fabulous friends and family.

I have hopes and dreams and goals, just like anyone elseâ€¦ and while Iâ€™m doing all I can to make those happen, the what ifs are always there. What if I never have children? What if I do but I donâ€™t live to see them grow up? What if I donâ€™t have the chance to finish out my career? What if I donâ€™t get to grow old with my husband?

Over the past few years thereâ€™s been astounding progress in treatments for cystic fibrosis. The life expectancy has risen to just over 40 years old, and there are all sorts of exciting developments on the horizon that will not only improve the quality of life for CF patients, but continue to extend it. These advancements have allowed me to reach milestones that so many CF patients before me didnâ€™t get to. But we still have a long way to go.

My greatest hope is that one day there will be no CF diagnosis to give. That no one â€“ parents, children, adults â€“ will have to wonder what a future with CF looks like.

Thatâ€™s why I have a pretty big birthday wish: In celebration of turning 30, Iâ€™m hosting an online fundraiser called For 30 More, where I hope to raise $15,000 in support of the Cystic Fibrosis Foundation and their life-saving research.

What does For 30 More mean? It means 30 more years ofâ€¦

dates with my husbandâ€¦

books to devourâ€¦

successes in my careerâ€¦

vacations to places near and farâ€¦

holidays with my familyâ€¦

meals to enjoyâ€¦

drinks with my girlfriendsâ€¦

For more life. Things big and small. For ALL people with CF.

Your donation to support For 30 More would mean the world to me, and no amount is too small. Even if it’s just giving up your morning coffee this week – every bit counts in making a difference for those living with CF.

Thank you from the bottom of my heart for letting me tell my story, and for joining me in this fight!

{ 19 comments }

kristin @ W [H] A T C H August 27, 2014, 2:39 pm
wow, what a moving story and incredible cause.
Amber August 27, 2014, 3:10 pm
I LOVE seeing healthy thriving adults with cf. I’ve been so interested in this disease ever since sobbing over “Alex: the life of a child” in the 80s and I’m now in research.

I’m a little confused though about Katherine’s wish that no one will be diagnosed with cf. can she elaborate? It is a genetic disease that is just passed autosomally so it is very unlikely it can be eradicated unless serious pre natal screening happens.
- Karen August 27, 2014, 5:34 pm
  Awesome – I basically have the same story of reading Frank Deford’s book many years ago in high school and now spend my days doing CF research!
- Katie H. August 28, 2014, 8:57 am
  I interpreted that to mean fatal diagnoses- I could be wrong though.
  - Katharine August 30, 2014, 8:38 pm
    Thanks for all the comments guys! And Amber, I basically meant what Katie H. said – you’re right in that there will always be a CF diagnosis to be given, but I meant that it won’t be a big deal because it will be curable. Hope that clears it up! Sorry for the confusion 🙂
lauren August 27, 2014, 3:37 pm
What a great cause, Katharine! Your story is very moving and as someone born the same year, I can hardly fathom what it must be like. A world without CF diagnoses would be amazing, it’s wonderful you’ve been able to manage yours and thrive.
My startup in RI is actually working with one of the researchers from this paper http://www.ncbi.nlm.nih.gov/pubmed/15302725 and we’ve turned his $1500+ medical device into a consumer one, but the results are the same. We’re currently crowdfunding, I won’t share that here, but please contact me if you’d like more info.
- Katharine August 30, 2014, 8:39 pm
  Lauren, that’s fantastic! And I’d love more info. Feel free to email me at fromatopink at gmail dot com.
Bobbie August 27, 2014, 3:38 pm
We have very good friends of ours who have a daughter with CF. She is 11 years old right now and has had a rough year. It is so inspiring to see how great you are doing. It gives me such hope! I am going to share this story with my friend.
- Katharine August 30, 2014, 8:40 pm
  Bobby, I’m so sorry to hear she’s had a hard time recently. And thank you for sharing my story with them! I’m always up for chatting if they ever wanted to reach out 🙂 fromatopink at gmail dot com
Ana August 27, 2014, 5:33 pm
This is such a great cause. The family of my husband also is affected with CF. Every year we do a bike ride 500 miles in 5 days to raise money and awareness. This year the ride will be from New Orleans to Florida.
http://www.bike4cf.org/directory

Riding 100 miles a day for 5 days is daunting. But this is nothing compared to the stamina a typical person with Cystic Fibrosis needs to face the challenges posed by their CF. CF has affected everyone’s life on our team. This ride is a way for us to raise awareness, give back to the CF community, and make some lasting memories along the way
- Katharine August 30, 2014, 8:41 pm
  Ana, thank you for supporting the cause! And in such an admirable way – 100 miles a day is very impressive! Best of luck 🙂
Amy @ Army Amy August 27, 2014, 8:03 pm
Last year my brother-in-law lost his battle with CF following the chronic rejection of his double lung transplant. It was so painful to see his health decline rapidly and to lose him, but it was also so beautiful to see the literal new lease on life that he got from his transplant. The time between the transplant and his death were some of the happiest days. It’s a cause near and dear to my hearts. Here’s hoping for a world with more people electing to be organ donors and great strides toward a cure! I also want to send Katharine positive vibes for a long, healthy life!
- Katharine August 30, 2014, 8:42 pm
  Amy, I’m so very sorry to hear about your brother-in-law. But I’m glad you got to have some happy times with him after transplant – and that HE got to have some good days. Hopefully that gives you and your family some peace. xo
Kate August 28, 2014, 3:08 pm
What an amazing and inspirational story!
- Katharine August 30, 2014, 8:42 pm
  Thank you, Kate!
Marty August 28, 2014, 4:00 pm
I wish you all the very best that life can offer. Don’t worry about the “what ifs” because so much of what we worry about never happens. Treasure each day and keep putting one foot in front of the other. And who knows?…maybe a cure will be found in your lifetime! <3
- Katharine August 30, 2014, 8:44 pm
  Marty, Thank you so much! That’s definitely the attitude I try to adopt, but it’s always a good reminder. Even when facing something like CF I can still lose sight of what’s truly important. And meanwhile I’ll just keep hoping for a cure!
Erica August 28, 2014, 6:36 pm
Fabulous- just fabulous. I have a cousin with CF (who is also approaching 30!). I will be passing word of your fundraiser along!!!
- Katharine August 30, 2014, 8:45 pm
  Erica, Wow, thank you! So glad to hear your cousin is also approaching this milestone 🙂 I’m always looking for CF buddies, so feel free to pass along my email (fromatopink at gmail dot com) if interested! xo

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