Elissa Went To The Movies

[gshase]

First her update....we went to Houston and her having MAC in the past is still an issue for transplant. They want to see her MAC free for a year not 9 months.
There is some hope in the future.....A new drug has tested positive for her DF 508 gene to suppress her illness and her team says they feel positive the she can get off oxygen after 30-45 days. This new drug has passed trials and should be released in July -August. They are applying for "Compassionate Release" To rush the process for her.

So Elissa has a friend whom the movie "5 Feet Apart " is about. We had 45 friends attend the premier Wednesday night and yes it is about CF.
This was hard for me to watch but it is a wonderful love story.
https://www.youtube.com/watch?v=XtgCqMZofqM

Hope we can do more movie nights.

[nvr2mny]

Gary, AWESOME! I pray that the “Compassionate Release” is granted. Hug that little girl for the community! I hope there are MANY more movie nights too. Blessings.

[AFC-911]

Yay! Elissa updates!!!

I might have to see this movie. You guys are an inspiration.

[DanielDudley]

Thank you for the update. I'm going to keep thinking positive thoughts, and practicing gratitude.

[pavulon]

Man..a medication to suppress her CF...that's what a dream come true would really be! Are there potential side effects?

I have a daughter with genetic issues. Her best hope is Crispr Cas9.

[Skytrooper]

I too, enjoy these updates ! I am hoping for great success with the new medication !

[rfuerst911sc]

Keep the good news coming ! Congrats on taking small steps forward she's a battler that's for sure .

[masraum]

Yay, fantastic. We wish Alissa and you all the best and positivity you can handle.

[unclebilly]

Great news Gary. Thank you for the update.

[Seahawk]

Originally Posted by DanielDudley

Thank you for the update. I'm going to keep thinking positive thoughts, and practicing gratitude.

Exactly my thoughts - wonderful news.

[fintstone]

Sounds like possibly some good news. That is great!

I cannot imagine how tough this has been for your daughter/family. I try to avoid these threads because they make me tear up...and I don't do tears very well. But, I do keep you/her in my prayers. She/you have/are putting up a hell of a fight. Even better days ahead I hope.

[Steve Viegas]

Here is to more movie nights!

[drcoastline]

I love seeing these posts come up. Happy to hear may be a drug to surpass the CF.

[wildthing]

Great news. Extremely hopeful... now the trials, are they in phase 3 now?

[recycled sixtie]

Hoping the new drug works out for Elissa. She is a brave girl and give her all my best Gary.
Cheers, Guy

[pwd72s]

Thanks for the update...

[flatbutt]

Originally Posted by gshase

First her update....we went to Houston and her having MAC in the past is still an issue for transplant. They want to see her MAC free for a year not 9 months.
There is some hope in the future.....A new drug has tested positive for her DF 508 gene to suppress her illness and her team says they feel positive the she can get off oxygen after 30-45 days. This new drug has passed trials and should be released in July -August. They are applying for "Compassionate Release" To rush the process for her.

So Elissa has a friend whom the movie "5 Feet Apart " is about. We had 45 friends attend the premier Wednesday night and yes it is about CF.
This was hard for me to watch but it is a wonderful love story.
https://www.youtube.com/watch?v=XtgCqMZofqM

Hope we can do more movie nights.

Gary, Elissa has already demonstrated that she has the fortitude and determination to justify your hope. Well done her, well done you!

[rwest]

Thanks for the update Gary, it always brightens my day to hear that your family is continuing to make forward progress.

Are you you having more good days than bad? Is Elissa able to lead a fairly normal life most of the time?

Wishing you all the best.

[pwd72s]

Updates are most appreciated. We're all pulling for Elissa, and also afraid to ask.