Comments for CF Roundtable

Comment on U.S.A.C.F.A. to Observe Rare Disease Day by Mary Pruitt

Mary Pruitt — Wed, 22 Feb 2012 15:05:08 +0000

Thanks so much for posting about Rare Disease Day! My son Gage passed away from a rare genetic disease called early-onset LAL deficiency (also known as Wolman disease) in 2009. It is really important to spread the word so that our loved ones can get equal access to treatment and care. Thanks again! Mary http://www.lalsolace.org

Comment on Appreciating My Pooch by laura

laura — Tue, 21 Feb 2012 20:46:07 +0000

Happy belated birthday, Penny! It sounds like you had an exciting day. I hope all those treats didn’t upset your tummy!!!!!
I also hope your mom gets to spend many, many more birthdays with you.
My dog, Kirby, sends birthday wishes as well. He gets excited about a lot of things, not just food and birthdays!!!

Comment on I Survived Leaving My Comfort Zone by Stephanie Rath

Stephanie Rath — Sat, 11 Feb 2012 04:21:22 +0000

Way to go Debbie!!! Here’s to new lungs soon for you. Then you can have even more adventures and enjoy them without repercussions

Peace,
Steph

Comment on I Survived Leaving My Comfort Zone by Bonnie Bleiweiss

Bonnie Bleiweiss — Fri, 10 Feb 2012 14:52:13 +0000

Thanks for the inspiration. I’m planning my 1st airplane trip in May. I’m concerned about packing all my equipment. I have a travel oxygen concentrator so I have to carry it on board plus battery packs and my Nebulizer and medications. What preparations did you make ahead of time with the airlines and how/what did you pack regarding your treatments.

Comment on I Survived Leaving My Comfort Zone by Carolyn R. Satre

Carolyn R. Satre — Fri, 10 Feb 2012 02:45:25 +0000

I’ve been wondering how your trip went and whether we’d ever hear back from you. So happy to know that you had a great time. Laughter is so healing, and I enjoyed the picture of the two of you so much. Thanks for the update. You’re a brave lady to share your CF trials and tribulations with us all…..

Comment on Stepping Out of My Comfort Zone by Jen E.

Jen E. — Mon, 23 Jan 2012 22:14:50 +0000

Good for you stepping out and doing something hard, but good! I, too, am finding it harder to travel (there’s so much equipment to bring!) and definitely do not like to do it alone anymore. Hopefully this post will inspire me!

Comment on Stepping Out of My Comfort Zone by Carolyn R. Satre

Carolyn R. Satre — Mon, 23 Jan 2012 10:41:20 +0000

So grateful that you shared your story. I find that most people want to feel useful, so I don’t think that you’ll be in short supply of folks who want to help you reach your destination successfully. Just have a great time visiting your friend, and rest lots. Make some great memories, take lots of pictures, and laugh until you cry. Can’t wait to hear about your trip on your safe return home!
Carolyn Satre (age 46)

Comment on Login by andreaeyes

andreaeyes — Fri, 06 Jan 2012 15:46:18 +0000

Were you able to subscribe yet? Please email me directly at aeisenman@usacfa.org and I can walk you thru subscribing. Sorry, I had not received your query earlier.
Andrea

Comment on Losing a good friend to the good fight. by Jen E.

Jen E. — Fri, 06 Jan 2012 14:09:22 +0000

What a beautiful, difficult, honest blog. Thank you for sharing.

Comment on Cold season is here. by bethsufian

bethsufian — Sat, 26 Nov 2011 20:22:33 +0000

The ginger tea is excellent! Thanks for the receipe, I was skeptical of boiling anything for 2 hours but it does seem to make the ginger tea have a medicinal quality. I also love juicing. I missed juicing for 2 days and really started to feel run down then I went back to drinking 32 oz. of freshly juiced vegetables with small amount of fruit and felt so much better.