Living With Cystic Fibrosis7 Aug 2023

Deliverer of CF Hope, Bob Emmelkamp

You will want to learn more about Bob Emmelkamp after this podcast, I promise!

I feel like Bob is everywhere and supportive of everyone.

Without a DNA connection to cystic fibrosis, Bob Emmelkamp became a lifelong CF fund-raising volunteer in 1976, when he helped put on a high school dance marathon where proceeds benefited the CFF. Since then, he has raised hundreds of thousands of dollars to advance research for a cure for CF, spreading the word and explaining the latest CF research news, and personally funds grants to the labs of some of the top CF scientists. For the past 20 years, Bob has attended the annual North American Cystic Fibrosis Science Conference. In 2017, Bob received a special invitation to attend the European Cystic Fibrosis Society’s exclusive CF Basic Science Conference in Portugal and was also asked to create and present a poster on “The Changing Nature of Interactions between Research Scientists and Patients”.

Producer: Beth Vanstone If you'd like to be featured contact her at: beth@thebonnellfoundation.org

Follow Bob at these locations: delivererofhope.net

Follow Bob: cfrn.computerbob.net

And follow him here: https://www.facebook.com/groups/CFResearchNews

Please consider making a donation: https://thebonnellfoundation.org/donate/

The Bonnell Foundation website: https://thebonnellfoundation.org

Bonnell Foundation email: thebonnellfoundation@gmail.com

Thanks to our sponsors:

Vertex: https://www.vrtx.com

Genentech: https://www.gene.com

Viatris: https://www.viatris.com/en

Like, subscribe, and comment on our podcasts!

Please consider making a donation: https://thebonnellfoundation.org/donate/

The Bonnell Foundation website:https://thebonnellfoundation.org

Email us at: thebonnellfoundation@gmail.com

Watch our podcasts on YouTube: https://www.youtube.com/@laurabonnell1136/featured

New: Shop our merchandise! https://thebonnellfoundation.org/product-shop/

Thanks to our sponsors:

Vertex: https://www.vrtx.com

Viatris: https://www.viatris.com/en

Read us on Substack: https://substack.com/@lstb?utm_campaign=profile&utm_medium=profile-page

Watch our trailer of Embracing Egypt: https://youtu.be/RYjlB25Cr9Y

Denne episoden er hentet fra en åpen RSS-feed og er ikke publisert av Podme. Den kan derfor inneholde annonser.

Episoder(208)

The Anomaly: living off donated organs and dark humor by Inka Nisinbaum

What would you do if you didn't know what your future held? For people living with cystic fibrosis, uncertainty is often a constant companion. Inka Nisinbaum faced one of the biggest unknowns of her l...

27 Jul 47min

Ireland's Rising Golf Star, David Howard, who happens to have CF

Luck of the Irish. Irish international amateur golfer David Howard doesn't seem to need luck with all the talent he has. We had an inspiring conversation about chasing big dreams while living with ...

20 Jul 44min

CF Scholars: Stories of Determination

Dreams and Determination: Meet four Inspiring students, Living with cystic fibrosis. One of the greatest joys of The Bonnell Foundation is helping young adults living with cystic fibrosis pursue their...

13 Jul 53min

Turning family loss into hope: Kate O'Donnell's story

I thoroughly enjoy doing my podcasts. It’s the one thing I truly miss from my television news reporting days — interviewing extraordinary people every single day. Through The Bonnell Foundation, I now...

6 Jul 44min

Jon Gay on Radio, Podcasting, and the Art of Storytelling

Jon Gay and I had a great time recording this podcast because we not only talked about podcasting, but also reflected on our years in the broadcast business and what people should know before starting...

29 Jun 48min

Running changed and saved her life - Katie O'Grady inspires

"Many people have their own thing that lights them on fire, for me, it's running" say Katie O'Grady. CF modulator drugs changes are a game changer for people living with cystic fibrosis. Katie O’Grad...

22 Jun 38min

Final Breath, First New Life: Jillian’s Transplant Journey

“Take in your final breath before your first new one.” Those were the words Jillian heard before her double lung transplant—words that would mark the end of one life chapter and the beginning of anot...

15 Jun 26min

Rare, But Not Invisible: Chrisy and Dr. Kingzett talk advocacy.

Chrisy and Dr. Kingzett, two women I met when we were all trying to raise our rare voices a little louder. Christine “Chrisy” Klavitter and Dr. Kristen Kingzett are both rare disease advocates, but mo...

8 Jun 58min