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All new and active discussions & journals
So much to accomplish and happy about it!
- By Jerry_at_NFDF · Posted November 19, 2009
- Journal · 0 replies
- It feels great to get the first NFDF newsletter out the door. It means that we were also able to launch others programs such as our social networking campaign, Victory Junction, the Physician search tool ...
Inspire members featured
- By Brian · New reply November 4, 2009
- Journal · 29 replies
- Today Massachusetts General Hospital's Proto Magazine published a wonderful profile of nine Inspire members. Each of these stories underscores what we all know to be true -- that Inspire is a special ...
Fabrazyme shortage for Fabry disease
- By Jerry_at_NFDF · New reply October 4, 2009
- Discussion in Treatment · 2 replies
- Tonight, there is a second Town Hall with Genzyme, the NFDF, FSIG, and the Fabry community about the shortage of Fabrazyme for treatment of Fabry disease. To participate, please call in on Wednesday ...
Fabry Disease Family Weekend Camp
- By Jerry_at_NFDF · Posted October 3, 2009
- Journal · 0 replies
- The NFDF and Victory Junction staff continued discussions this week about our Fabry Disease Family Weekend Camp at Victory Junction Gang Camp in November 2010. Early detailed planning will ensure our ...
NFDF e-Newsletter
- By Jerry_at_NFDF · Posted October 2, 2009
- Journal · 0 replies
- The 1st edition of the NFDF "Fabry Focus" e-Newsletter is finished. We are compiling our email list to send it about Oct 15th. People can sign-up at www.TheNFDF.org from the What's Hot section of the ...
Diagnosis, Management & Treatment of Progressive Neurological Disease from
Amazing Experience
- By StephLynStill · New reply September 6, 2009
- Journal · 5 replies
- I have been living in the "LysoWorld" now for about six years. I started very pinpointed with one particular disorder (there are over 60 - most w/ ridiculously hard names to pronounce). It took a long ...
Guestbooks are now live!
- By TeamInspire · New reply August 15, 2009
- Journal · 6 replies
- Hello everyone, Last week we mentioned that we'd be adding guestbooks to Inspire in the near future, and they are now live! We're very excited about this feature and hope you enjoy it. To check out your ...
5 minutes on the lysosome. Because it's time we know.
- By StephLynStill · Posted August 13, 2009
- Journal · 0 replies
- So did you ever wonder what happens to the tadpole's tail? Does it just fall off? No actually. Lysosomes eat it. (autophagy: the cell's ability to eat itself...) And the webbing in our fingers and toes ...
Scheduled maintenance this evening
- By TeamInspire · New reply August 12, 2009
- Journal · 13 replies
- All, Inspire will be performing database updates this evening starting at 8:00 Eastern. We expect the updates to take no more than 2 hours and the site will be unavailable at this time. We thank you for ...
Eye appt. what should I ask the doctor?
- By Chickinpic · New reply August 3, 2009
- Journal · 4 replies
- Hello, my son has just been diagnosed with Lysosomal disease, but we don't know which one yet? He has an eye appt. on Monday and I'm not sure what to ask the doctor to look for? Corneal clouding? red ...
Lysosomal Disease and Alzheimer's
- By StephLynStill · Posted July 27, 2009
- Journal · 0 replies
- Hi, Here is another little boy affected with Lysosomal Disease, Dillon. The correlations between Lysosomal Disease and much more well-known issues like Alzheimer's are being uncovered every day. With ...
Eye appt. what should I ask the doctor?
- By Chickinpic · New reply July 8, 2009
- Discussion in Newly diagnosed · 4 replies
- Hello, my son has just been diagnosed with Lysosomal disease, but we don't know which one yet? He has an eye appt. on Monday and I'm not sure what to ask the doctor to look for? Corneal clouding? red ...
Diagnosis, Management & Treatment of Progressive Neurological Disease
Share your story via video!
- By TeamInspire · New reply June 23, 2009
- Journal · 28 replies
- Sometimes the most powerful message each of us can share is our personal story -- our own experience. With upcoming healthcare legislation pending, one way we can be advocates is to share these stories ...
Danons
- By paul46uk · Posted June 23, 2009
- Discussion in Emotional support for parents and caregivers · 0 replies
- Hello all, just found this site ok here goes we are a family in the uk with three boys with danons, we are trying to find other familys in the world who have the same illness so please do get in contact ...
Follow Inspire on Twitter and Facebook!
- By TeamInspire · New reply June 12, 2009
- Journal · 32 replies
- We're happy to announce that you can now stay in touch with what's happening at Inspire by following us on both Twitter and Facebook. While Inspire communities are still the best places to connect with ...
Guestbooks - An exciting addition to Inspire
- By TeamInspire · New reply June 9, 2009
- Journal · 35 replies
- Hello everyone, We're writing to let you know about a great new feature we'll be adding to Inspire in the very near future: guestbooks. This is a feature that many of you have requested, and we're very ...
Diagnosis
- By miababy · New reply June 4, 2009
- Discussion in Raising a child with lysosomal disease · 13 replies
- My daughter just turned a year old and has been having seizures since she was 7 weeks old. She had her first seizure on April fools day - I don't think I will ever forget that. In that first 24 hour period ...
Dogs & Disorders
- By StephLynStill · New reply May 30, 2009
- Journal · 2 replies
- I had the opportunity to meet about 5 dogs with Lysosomal Disease (mps, I think), about a year ago. It was really an eye-opening and amazing experience. Now, I keep finding more and more articles about ...
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The LysoLife Community connects families, friends and caregivers for support and inspiration. The LysoLife Community is sponsored by the Hide & Seek Foundation in partnership with Inspire.