Byrds Fore A Cure-Cast
We retired this podcast, because we couldn't parse it for 10 consecutive times.
Byrds For A Cure-Cast is dedicated to sharing the latest on SMA research as well as other topics of interest to our muscular dystrophy family and the special needs community. Learn more at byrdsforeacure.org.
- Website
- http://byrds.libsyn.com/podcast
- Description
- Byrds Fore A Cure-Cast is dedicated to sharing the latest on SMA research as well as other topics of interest to our muscular dystrophy family and the special needs community. I am a parent of three children, two of whom have type 2 spinal muscular atrophy.
- Language
- 🇬🇧 English
- last modified
- 2017-10-14 06:23
- last episode published
- 2017-07-01 05:07
- publication frequency
- 22.38 days
- Contributors
- Cassandra Johnson
- Author Owner
- Explicit
- false
- Number of Episodes
- 14
- Rss-Feeds
- Detail page
- Categories
- Kids & Family Science & Medicine Health & Fitness
Recommendations
Episodes
| Date | Title & Description | Contributors |
|---|---|---|
| 2017-07-01 | Happy Summer, SMA community! In this episode I touch on MDA camp, SMA drama on Facebook, and air travel with a wheelchair. Also, a Spinraza update! (Spoiler: the twins still aren't approved for Spinraza.) Please like us on Facebook, and follow us on Tw... | |
| 2017-05-26 | We've had the last day of school here, so summer break has officially begun! The twins got their new wheelchairs just in time for summertime shenanigans, but the insurance approval process can be a long one. Commiserate with me on that today, plus it's... | |
| 2017-04-25 |
Ep 12: PFDD With the FDA& Cure SMA + Avexis Gene Therapy Trial Last week I was one of ~50 chapter board members to attend the Patient Focused Drug Development meeting in Hyattsville, MD. Members of the SMA community spoke before members of the FDA about their journeys with SMA, or that of their child(ren). I have ... |
|
| 2017-04-12 | Kate Mathany joins me today to share their experience with their seven-year old SMA type 1, Getty Storm. She's halfway through the "loading phase" (so she's had two of the first four doses), and it's been quite a journey just to get to this point! Read... | |
| 2017-03-28 | The Immortal Life of Henrietta Lacks is both a nonfiction book and the basis for an upcoming HBO movie starring Oprah Winfrey. I make a case for why everyone should know who Henrietta is, and urge you to read the book by Rebecca Skloot (it's $11 for K... | |
| 2017-02-28 |
Ep 9: Happy Rare Disease Day! And the State of SMA Research Now vs 2010 Happy Rare Disease Day! (Though, how happy are we to be celebrating rare disease...?) Social media today is buzzing with #rarediseaseday, so check out the hashtag and be inspired by the tweets, blog posts, and moral support of our rare disease commu... |
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| 2017-02-01 | The SMA community has had a full month to process the magnitude of FDA approval of the first treatment for SMA, Spinraza, and to learn more about the process of getting insurance approval and where to go locally to get it. The shininess of Spinraza is ... | |
| 2016-12-31 | The U.S. FDA approved nusinersen (now known as Spinraza) on December 23rd, 2016. The following week Biogen announced the cost of this first-ever therapy for SMA, and the SMA community went on to lose it's mind. I spend some time addressing this, plus a... | |
| 2016-11-29 | Welcome back, and happy #GivingTuesday! Don't worry, I'm not asking you to give money. I have a tip or two for getting through cold and flu season, as well as some holiday gift suggestions for kiddos with neuromuscular disease or other special needs. S... | |
| 2016-10-24 | The planets aligned and my friend Danielle and I finally had some time to talk shop and record our conversation for you! Danielle is an RN, a faithful and compassionate soul, and a funny lady. I look forward to having her on future episodes. Danielle m... |