Living With Cystic Fibrosis13 Mai 2024

The Final 10 percent

Approximately 10 percent of the CF population is waiting for a CF modulator drug that will help them by correcting the underlying condition of their disease. Current modulator drugs help more common CF mutations. Emily Kramer Golinkoff is one of the people who doesn't have a CF modulator that will help her. Her Foundation, Emily's Entourage, is a leader in research. They are focusing on people with CF who have the nonsense mutation.

On Emily's team is Dr. Chandra Ghose, who is the Chief Scientific Officer. Dr. Ghose founded Bioharmony Therapeutics, an early stage biotech startup that specialized in the development of novel antimicrobials, to combat drug resistant bacterial infections.

Chandra spent 8 years at the Aaron Diamond AIDS Research Center where she focused her research on developing life saving vaccines in the laboratory of Dr. David Ho. Chandra earned her PhD from New York University School of Medicine in microbiology and her bachelors degree from Saint Louis University in biology and theology, splitting her time between the U.S. and Spain campuses.

For more information about Emily's Entourage: https://www.emilysentourage.org

For registry information: https://www.emilysentourage.org/cystic-fibrosis-patient-registry/

For Emily's Entourage information: https://www.emilysentourage.org/eeupdates/

Follow EE at: @emilysentourage

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(207)

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

Failure, Grit, and Breakthroughs with Dr. Tom Kaiser

“Behind every breakthrough are countless failures no one ever sees—but that’s exactly what makes progress possible.” Dr. Thomas Kaiser. When I have scientists on the podcast: they’re some of the coole...

1 Jun 42min