teamsanfilippo.org
Team Sanfillipo — Parents united to find a cureCure Sanfilippo, Gene therapy, Get help for Sanfilippo, MPS, MPS III, Rare diseases, lysosomal disease, and Fundraising
http://www.teamsanfilippo.org/
Cure Sanfilippo, Gene therapy, Get help for Sanfilippo, MPS, MPS III, Rare diseases, lysosomal disease, and Fundraising
http://www.teamsanfilippo.org/
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Team Sanfillipo — Parents united to find a cure | teamsanfilippo.org Reviews
https://teamsanfilippo.org
Cure Sanfilippo, Gene therapy, Get help for Sanfilippo, MPS, MPS III, Rare diseases, lysosomal disease, and Fundraising
teamsanfilippo.org
Team Sanfilippo Foundation Affiliate Guidelines
http://teamsanfilippo.org/affiliates
Parents united to find a cure. Scientific and Research Advisory Board. What is Sanfilippo Syndrome? How You Can Help. Host or Attend an Event. Products / Items for sale. Become a Hero Among Us. Newsletter Sign Up Form. Research – Australia. Research – Canada. Research – France and Netherlands. Research – Italy. Research – Poland. Research – Spain. Research – United Kingdom. Research – United States. Therapies and Upcoming Treatments. Gene Therapy Coming 2014! Name, address, and contact information for yo...
Team Sanfilippo Board of Directors
http://teamsanfilippo.org/board-of-directors
Parents united to find a cure. Scientific and Research Advisory Board. What is Sanfilippo Syndrome? How You Can Help. Host or Attend an Event. Products / Items for sale. Become a Hero Among Us. Newsletter Sign Up Form. Research – Australia. Research – Canada. Research – France and Netherlands. Research – Italy. Research – Poland. Research – Spain. Research – United Kingdom. Research – United States. Therapies and Upcoming Treatments. Gene Therapy Coming 2014! New York, USA. New York, USA. How You Can Help.
Site Map
http://teamsanfilippo.org/site-map
Parents united to find a cure. Scientific and Research Advisory Board. What is Sanfilippo Syndrome? How You Can Help. Host or Attend an Event. Products / Items for sale. Become a Hero Among Us. Newsletter Sign Up Form. Research – Australia. Research – Canada. Research – France and Netherlands. Research – Italy. Research – Poland. Research – Spain. Research – United Kingdom. Research – United States. Therapies and Upcoming Treatments. Gene Therapy Coming 2014! How You Can Help. Become a Hero Among Us.
What is Sanfilippo Syndrome?
http://teamsanfilippo.org/what-is-sanfilippo-syndrome
Parents united to find a cure. Scientific and Research Advisory Board. What is Sanfilippo Syndrome? How You Can Help. Host or Attend an Event. Products / Items for sale. Become a Hero Among Us. Newsletter Sign Up Form. Research – Australia. Research – Canada. Research – France and Netherlands. Research – Italy. Research – Poland. Research – Spain. Research – United Kingdom. Research – United States. Therapies and Upcoming Treatments. Gene Therapy Coming 2014! What is Sanfilippo Syndrome? In the second st...
January 11, 2016 Gene therapy for A and B, ready to start in Spain!
http://teamsanfilippo.org/genetherapy
Parents united to find a cure. Scientific and Research Advisory Board. What is Sanfilippo Syndrome? How You Can Help. Host or Attend an Event. Products / Items for sale. Become a Hero Among Us. Newsletter Sign Up Form. Research – Australia. Research – Canada. Research – France and Netherlands. Research – Italy. Research – Poland. Research – Spain. Research – United Kingdom. Research – United States. Therapies and Upcoming Treatments. Gene Therapy Coming 2014! LET’S CROSS THE FINISH LINE TOGETHER. If you ...
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Team Sanfilippo: April 2011
http://teamsanfilippo.blogspot.com/2011_04_01_archive.html
Tuesday, April 26, 2011. Published with Blogger-droid v1.6.8. Links to this post. Thursday, April 7, 2011. Measuring Up As a Father. Pop culture has done the male psyche a great disservice. If you watch a modern sitcom, the dads are almost always portrayed as bumbling idiots. Nice guys, but somewhat inept at the same time. Think of Ray Romano or George Lopez or any other father on one of these shows - they are all love-able. His dad completed an Ironman Triathalon with his son. WOW! That is (swim 2.5...
Hope for Ryan and Brayden: October 2010
http://ryanandbrayden.blogspot.com/2010_10_01_archive.html
What is Sanfilippo Syndrome? To donate towards rearch for a cure please go to one or both of the following:. Http:/ www.teamsanfilippo.org/. Http:/ www.mpssociety.org/. Enjoy the little things, for one day you may look back and realize they were the big things." - Robert Brault. It's Not About Making it Through the Storm, It's Learning to. DANCE IN THE RAIN. A child is like a butterfly in the wind. Some can fly higher than others,. But each one flies the best it can. Why compare one against the other?
Jonah's Just Begun: My question is: How will you do it?
http://jonahsjustbegun.blogspot.com/2015/03/my-question-is-how-will-you-do-it.html
Thursday, March 19, 2015. My question is: How will you do it? Friday February 27th I spoke at the National Institute of Health (NIH) for their Rare Disease Day (RDD) event. I was asked to tell people about my family, why we created JJB then Phoenix Nest. There were a few hundred people in attendance, heavy on patient advocates. The NIH RDD speakers and panelists. My panel is about an hour into it. There were three questions that kept being asked. 1 How did you find the scientists? 3 How do you do it?
Jonah's Just Begun: January 2015
http://jonahsjustbegun.blogspot.com/2015_01_01_archive.html
Thursday, January 8, 2015. Staring fear in the face. I suppose it’s time to face my fears. I realize now by working my brain into a grave that I have been running from Sanfilippo and my fear that it will take Jonah. It’s time that I turn around and stare Sanfilippo down. You’re not taking my kid. I look at Jonah and I see all the way to his soul. I love every bit of him. Sanfilippo is part of him it’s written in his DNA. So does that mean I love Sanfilippo too? Am I allowed to be happy? I’m thinkin...
Jonah's Just Begun: June 2014
http://jonahsjustbegun.blogspot.com/2014_06_01_archive.html
Wednesday, June 25, 2014. Parent Power.I like that tag line- much better then fighter mom. (Stole it from 60minutes Australia.). 8221; Breathe, I’m not alone. Here is the 60 Minute episode, inspired by the Donnell’s. http:/ lnkd.in/b6n9ieU. Compare it to the radio interview that Kristine and I did last week. http:/ fresh1027.cbslocal.com/2014/06/15/spotlighting-sanfilippo-syndrome-with-cbs-2s-kristine-johnson/. 8232;I’d finger paint more, and point the finger less. 8232;I would be firm less often, and af...
Life with Emily: Spring Fling 2011 at MLA!!!
http://mylifewithemily.blogspot.com/2011/05/spring-fling-2011-at-mla.html
The adventures of living with a little girl who just happens to have Sanfilippo Syndrome. The challenges are great, but the adventures are many! Thursday, May 5, 2011. Spring Fling 2011 at MLA! Today was such a busy day! Having a SF kid isn't all doctors and illnesses. I mean sure, we have our own issues, but we have the opportunity to think like a kid for a little while longer. For her everything is new and exciting. So for now, we are running with it, making lots of memories along the way! My name is A...
Life with Emily: June 2011
http://mylifewithemily.blogspot.com/2011_06_01_archive.html
The adventures of living with a little girl who just happens to have Sanfilippo Syndrome. The challenges are great, but the adventures are many! Saturday, June 4, 2011. Things to do with Emily on a rainy day. I think this is a problem most mothers of toddlers face. What to do with a toddler that has a LOT of energy when you can't go outside because its raining and miserable? This game has been a child hood favorite for ages it seems. Only now, you, the parent get to play too! Just as soon as you vacuum t...
Life with Emily: Celebrate the small things...
http://mylifewithemily.blogspot.com/2011/06/celebrate-small-things.html
The adventures of living with a little girl who just happens to have Sanfilippo Syndrome. The challenges are great, but the adventures are many! Thursday, June 2, 2011. Celebrate the small things. Low and behold, after the sting of it went away, Emily was still here! We are just learning to make some adjustments. May was a month for adjustments and small celebrations. She learned to ride her tricycle! Now we can go for walks and stuff! It seems when she figures. Now she's actually trying to stand on her ...
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teamsandworldmotocross.skyrock.com
teamsandworldmotocross's blog - Saison 2008 - Skyrock.com
Voila se blog va retrasser notre saison sportives 2009! Avec une nouvelle discipline pour moi l'enduro! 13/02/2008 at 6:58 AM. 16/02/2009 at 9:01 AM. Subscribe to my blog! 22 mars 2009: COURSE INFERNAL. 31 mais 2009: ROCROI (sous reserve). 21 juin 2009 : BRIONNE. 26 juillet 2009: THIBERVILLE. 20 sept 2009 : BELLOU. 25 oct 2009 : AILLY sur NOYE. 8 nov 2009 : LE MERZER (sous reserve). Please enter the sequence of characters in the field below. Posted on Monday, 16 February 2009 at 9:01 AM. Pendant les vaca...
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Team Sanfilippo
Monday, May 30, 2011. I moved my blog. I have moved my blog. You can now find us at:. Http:/ www.rallyforreed.com. Links to this post. Tuesday, April 26, 2011. Published with Blogger-droid v1.6.8. Links to this post. Thursday, April 7, 2011. Measuring Up As a Father. Bottom line, Ryan is a grown healthy man and many kids today are better off because of what the Dants accomplished. I was lucky enough to have lunch with Mark on Wednesday and he is an awesome guy. He is so humble and down to Earth. ...That ...
Team Sanfillipo — Parents united to find a cure
Parents united to find a cure. Parents united to find a cure. Scientific and Research Advisory Board. What is Sanfilippo Syndrome? How You Can Help. Host or Attend an Event. Become a Hero Among Us. Newsletter Sign Up Form. Research – Australia. Research – Canada. Research – France and Netherlands. Research – Italy. Research – Poland. Research – Spain. Research – United Kingdom. Research – United States. Gene Therapy Coming 2014! What is Sanfilippo Syndrome? How You Can Help Team Sanfilippo.
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TeamSanG's blog - Blog de TeamSanG - Skyrock.com
C'est blog sang les phtos des joueur de ma team. 03/02/2009 at 9:20 AM. 06/02/2009 at 11:35 AM. Subscribe to my blog! Un poto super Css. il s'apelle MrSux , il rage souvent quand il meurt mais il est trop marant. Don't forget that insults, racism, etc. are forbidden by Skyrock's 'General Terms of Use' and that you can be identified by your IP address (66.160.134.4) if someone makes a complaint. Please enter the sequence of characters in the field below. Posted on Friday, 06 February 2009 at 11:09 AM.
Blog de teamsang20 - PROFITONS DE LA VIE .....!!!!! - Skyrock.com
Mot de passe :. J'ai oublié mon mot de passe. PROFITONS DE LA VIE ! Uen simple représentation de ma personne et de ceux ke j'aime ! Mise à jour :. Abonne-toi à mon blog! Contacte : 06.50.82.06.46. N'oublie pas que les propos injurieux, racistes, etc. sont interdits par les conditions générales d'utilisation de Skyrock et que tu peux être identifié par ton adresse internet (67.219.144.114) si quelqu'un porte plainte. Ou poster avec :. Posté le mardi 14 août 2012 14:57. Poster sur mon blog.
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