[helen-baldwin]

Born in Tacoma, WA, grew up in Fort Worth, TX, now living in Jefferson, NC, and not planning to move again!

 

[helen-baldwin]

I am just now getting to this, but the timing is actually pretty perfect.

After our baby Jeffrey was diagnosed with SMA (1997), we learned that my mother’s cousin’s two older granddaughters also had SMA. Both were diagnosed with Type 2 – the younger one weaker and actually diagnosed just before the older one. The younger one, a young adult, passed away last year. The older one is the mom of a 3-year old daughter. She continues to work from home; however, my mother’s cousin has just written that she is getting weaker. I don’t know what she’s able to do, but I know her father has hired a nanny to help with her daughter.

We have never met them. We live in NC, and they are in CA. For some reason, they have not been interested in participating in the SMA community (despite my encouragement!); however, my mother’s cousin is very interested in the benefits of Spinraza and Risdiplam. She’s curious to know if it might help her granddaughter and, if so, how.

Some time ago, I sent her links to articles about Spinraza, along with FB groups I thought would be beneficial. I doubt they did anything, but I’m game to send info again. Would anyone mind my sharing what you’ve shared here about your results with Spinraza? And if you have a good link or more for Risdiplam (i.e., results that have been seen in trials, etc.), would you please share? I don’t know anything about Risdiplam, other than it’s an oral treatment.

If you’d like to send it via email, my address is [email protected].

Thanks so much in advance! It’s hard to fathom that I’m asking about ANOTHER treatment for SMA!!! Truly mindboggling for those of us oldtimers….

[helen-baldwin]

Am cleaning out my ‘hoarder’ inbox and found this – https://smanewstoday.com/2019/11/12/risdiplam-improves-motor-function-in-people-with-sma-types-2-and-3-interim-phase-2-3-data-show/

If you know of others, I’d love to have them.

Thank you!

[helen-baldwin]

Thank you for highlighting some of the columns, DeAnn! I see so many terrific topics covered by ‘real’ people, and I’m sure it’s not just those writing about SMA. Some day I hope to have enough time to read and get to know everyone 🙂

[helen-baldwin]

Hi, Robin, and welcome (you’re the first person I’ve welcomed because I had no clue how to do that. Now I have a little clue!)!

I agree that having a diagnosis is a huge first step in determining what comes next. I’ve only been with BioNews a short time, but it’s already apparent that this is a tremendously helpful and supportive group! I feel confident that you’ll be really glad you’re here 🙂

Sending positive beams that you’ll have an encouraging appointment on the 17th!

 

 

[helen-baldwin]

Thanks so much for the warm welcome, Kevin, and for enabling me to see if I could venture beyond ‘toddlerspeak’ again!

I look forward to participating on this fantastic team!

Halsey, I have no idea how to respond to you other than this, so thank you, and welcome yourself!