CF Attorney and Patient Beth Sufian

CF Attorney and Patient Beth Sufian

When Beth Sufian was born with Cystic Fibrosis in 1965, there were no CF treatments and no prescriptions for enzymes that she could take to digest her food. Beth has dealt with many CF challenges along the way, and it made her stronger and molded her into the attorney she is today. Sufian lives in Texas where she's practiced law for the past 25 years, many of those years with her husband. She focuses on health law so she can help CF patients and people with other chronic illnesses navigate the complex legal system. She was recently in the news again for helping a 22 old woman with CF who lost her Social Security benefits because that agency felt her health had improved. Sufian will talk about the Megan Willis case, special needs trusts (do you need them?) and clear up legal misunderstandings about CF. She'll also talk about her life, growing up with Cystic Fibrosis.

For more information on the CF Legal Information Helpline, click or tap here.

The hotline number is (800) 622-0385

You can also email CFLegal@sufianpassamano.com

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Episoder(208)

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

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

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

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

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 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

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

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.

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

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