rarediseasesnetwork.org
Lysosomal Disease Network
http://www.rarediseasesnetwork.org/LDN/index.htm
Rare disease research groups. Stay Connected - Join the Contact Registry. For Researchers and Healthcare Professionals. Conference on Clinical Research for Rare Diseases 2016. Other Rare Disease Initiatives. Spotlight on Rare Diseases Newsletter. What is the RDCRN? Data Management And Coordinating Center (DMCC). About the Lysosomal Disease Network. Alpha-Mannosidosis types I / II. Batten disease, late infantile. Galactosialidosis types I / II. Sialidosis types I / II. Sialuria, Salla disease. A Historica...
jonahsjustbegun.blogspot.com
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?
jonahsjustbegun.blogspot.com
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...
jonahsjustbegun.blogspot.com
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...
teamsanfilippo.blogspot.com
Team Sanfilippo: MPS Societies/Friends
http://teamsanfilippo.blogspot.com/p/mps-societiesfriends.html
Note: If I have left your organization off this list, please post a comment at the bottom of the page with your site name and URL and I will gladly add it. J onah's Just Begun. Sanfilippo Children's Research Fund. Little Mackiek and Great Wizards. US National MPS Society. I rish MPS Society. Simon Ibell's Ibellieve Foundation. Subscribe to: Posts (Atom). Official Team Sanfilippo Web Site. Team Sanfilippo Youtube Page. Team Sanfilippo Ebay Store. A Father's Perspective on His Very Sick Kid. Okay, lets adm...
theboycecrew.blogspot.com
Boyce Lane: updates regarding gene therapy, please read and share
http://theboycecrew.blogspot.com/2014/04/updates-regarding-gene-therapy-please.html
Become part of the Boyce Lane family and get new posts right in your inbox! Updates regarding gene therapy, please read and share. Thank you, friends! The response to my blog post and Eliza's video, is amazing! Not only has the video gone viral, it is causing other media attention. Because of your sharing on Facebook, my last blog has over 3,000 views! Please read the updates and share: Today.com article. Donations and tax deductions. Why parents do the fundraising. In a perfect world, pharmaceutical com...
teamsanfilippo.org
Resource Links
http://teamsanfilippo.org/resource-links
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! Http:/ www.miracle4will.com/. How You Can Help.
bostontvblog.blogspot.com
Boston.TV Blog: Ben's Dream
http://bostontvblog.blogspot.com/2007/12/bens-dream.html
Boston.TV is an online video network showcasing unique, locally relevant, high quality video content about the Boston area. Friday, December 21, 2007. Boston.TV was on hand at the Ben's Dream event recently to capture friends helping Ben battle San Fillipo syndrome. According to bensdream.org. Over Columbus Day weekend 2007, The Ben's Dream Baseball Tournament and BENefit Concert raised over $10,000 for Ben's Dream to aid the mission of finding a cure for Sanfilippo Syndrome. We invite you to explore our...
pmgwebdesign.com
Custom Built Web Sites. Web site design and construction.
http://www.pmgwebdesign.com/website_customers.html
Just A Few Satisfied PMG Web Design Customers. Shopping Cart Web Site:. Shopping Cart Web Site:. Shopping Cart Web Site:. Shopping Cart Web Site:. Shopping Cart Web Site:. There has never been a. Better time for e-commerce. Contact us for a custom built. Shopping cart for your website. We can assist you with a. Automatic Credit Card processing.
jonahsjustbegun.blogspot.com
Jonah's Just Begun: May 2014
http://jonahsjustbegun.blogspot.com/2014_05_01_archive.html
Wednesday, May 14, 2014. I take it back! I take it back. The other shoe has not dropped, it’s back on and Velcro tight. We had Jonah’s adenoids taken out in March and it has made all the difference in the world! It’s been a pretty amazing month. Dr. Cao’s run raised over $11,000! Our friend Pyare is doing his first half marathon on Sunday and he is only short $300.00 for his $3,000 goal! Https:/ www.crowdrise.com/bkhalfforjjb/fundraiser/jonahsjustbegunfound. Tomorrow is MPS awareness day. It’s ...Then we...
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