The Atypical HUS Foundation

Dana M Simone
  • Female
  • Shrewsbury, MA
  • United States
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Dana M Simone's Page

Profile Information

Birthday
June 17
Do you have a friend or family member diagnosed with aHUS?
Yes
Are you medical personnel or an aHUS researcher with an interest in aHUS issues?
No
My membership request involves business interests as I seek additional aHUS information for business applications.
no
My child ( or myself as a patient) is best described as:
Factor H (CFH) /Protein (Gene)

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Dana M Simone's Blog

aHUS Global Genes Meetup Boston

Two weeks ago about 30 of us gathered on the MIT campus in Cambridge, MA for the Global Genes meetup. It was my third meeting in three years, but my first local one. I was thrilled to present as a Patient Advocate on behalf of the Foundation. My husband and I were there for our son, Jack, who presented eight years ago at age 13 (he did not attend).

This was a first time event for many attendees.The majority of attendees were patients themselves, and all adults at time of diagnosis.…

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Posted on July 19, 2015 at 5:43pm — 1 Comment

Another successful NORD event in New Jersey!

Back from New Jersey where Steven and I attended the second (I hope annual) NORD event for aHUS patients and families. We met some great people at the kick-off dinner Friday night and conversation was lively and constant. For many, it was the first time meeting others fighting the same fight and celebrating the same victories.



On Saturday, about 30 of us gathered for an educational presentation from Dr. Ken Lieberman, an aHUS expert. Dr. Lieberman speaks very conversationally and his… Continue

Posted on June 1, 2014 at 9:19pm — 4 Comments

36-month transplant anniversary - Medicare benefits end

Hi -
Jack is nearing his 36-month transplant anniversary (YAY!), and I believe his Medicare benefits will end.
Can anybody advise on how they managed this. I'm wondering if we need to pro-actively stop his plan, or if it's automatic. A call into Medicare wasn't very fruitful...
Thanks!

Posted on April 26, 2014 at 10:11am — 2 Comments

On Twitter? Enter to win $1,000 for our Foundation from Jet Blue!

Here's the tweet with the rules:

@JetBlue: Chip away at your cause & tweet us to win $1,000 for your charity by using #ICHIPINFOR by 1/20! Terms apply. http://t.co/FG8iM5oDFa

Here's an example (my tweet:):

@DanaSimone1: .@JetBlue #ICHIPINFOR @AtypicalHUS, an extremely rare blood disease that damages kidneys and other vital organs, affects kids, has no cure

Good luck to us!

Posted on January 3, 2014 at 4:07pm

Comment Wall (8 comments)

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At 6:29pm on July 13, 2014, Linda Burke said…

Thanks, Dana - for inspiring the new blog about Apps at http://atypicalhus.ning.com/profiles/blogs/is-there-an-app-for-that

At 9:33am on December 4, 2012, Linda Burke said…

Hi Dana,

Thanks to Jennifer Christopher's interest in connecting with other adult aHUS patients, I've created a new forum for this website - a featured Forum that will keep the issues of adult aHUS patients at the front and center!  Perhaps Jack would like to participate? So that others may more easily share infomation, I'd appreciate it if you'd consider adding (or transferring) your comments onto this more visible spot.  I've invited others with the message below:

'Our thanks to Jennifer Christopher for starting this important aspect of outreach and discussion among aHUS adults!  Her insight has highlighted a need for a dedicated 'Forum for Adult aHUS Patients', so please visit our newly featured forum for adult aHUS patients to share their journey and to post concerns and questions.

Join the conversation at http://atypicalhus.ning.com/forum/topics/adults-with-ahus .'

At 10:31pm on July 9, 2011, Linda Burke said…
Happy birthday to Jack!!  Your family truly has reason to celebrate....
At 11:47pm on June 20, 2011, Linda Burke said…

Hi Dana,

    Just checking in for an update and to hear some new good news about Jack....

At 10:19pm on May 8, 2011, Linda Burke said…

Hi Dana,

Hope things are progressing well with Jack's transplant team and all the things that need to be processed in order to be "listed'.  Have you gotten insurance approval for Soliris already, or is that still an ongoing process?

It's interesting that several of our aHUS kiddos have vision issues, so if Jack's nephrologist has some articles, I think everyone would appreciate the info.  If you'd prefer to email the articles to me at Linda@atypicalhus.org , I'll be certain to post them.  Best wishes...please keep us posted.

At 8:15pm on August 23, 2010, Cheryl Biermann said…
We are happy to have you here and look forward to hearing your story-but I need to let you know that it is Linda and her family we have to thank for the interactive site, although we are thrilled to be able to participate. We opened the other static site years ago and always wanted to do more but just couldn't pull it together. You can imagine our excitement when Linda contacted us about doing this, haven't they done a wonderful job?!
At 11:34am on August 23, 2010, Cheryl Biermann said…
Hi Dana,

Welcome to our website, we look forward to hearing from you, feel free to join in!
At 11:03pm on August 22, 2010, Linda Burke said…
Hi Dana,
Welcome to the interactive website of The Foundation for Children with Atypical HUS, where we share information, inspiration, and insight into this rare disorder. Please leave a comment indicating your interests for our online aHUS community.members.
 
 
 

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