phoenixnestbiotech.com

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...

rarediseasematters.org

Rare disease advocates moving into biotech | Rare disease matters

http://www.rarediseasematters.org/2014/04/rare-disease-advocates-moving-into-biotech

Recognizing and understanding the value of patient-driven innovation. Why Rare disease matters. Patient-initiated research foundations: A source of funding, but more importantly a continuous source of inspiration. Importance rare disease patient advocacy recognized in scientific literature. Regulators move patient engagement to the next level: benefit-risk assessment →. Rare disease advocates moving into biotech. Therapy developed by patients for patients. 8220; They are not the only ones…. The most well...

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...

jonahsjustbegun.blogspot.com

Jonah's Just Begun: April 2014

http://jonahsjustbegun.blogspot.com/2014_04_01_archive.html

Wednesday, April 9, 2014. Our families are letting the press into our homes our lives, we’re exposing our beautiful children, we do this in hopes of convincing the world that we need treatments. As parents we struggle with the exposure. Do we really want the world to know that our children are different? What if someone shows our child the interviews of his/her parents crying on t.v? What if another child asks our children whats wrong with them? What kind of impact will it have on our healthy children?

jonahsjustbegun.blogspot.com

Jonah's Just Begun: Game On!

http://jonahsjustbegun.blogspot.com/2015/07/game-on.html

Wednesday, July 8, 2015. The 26th was Jonah’s last day of first grade! Jonah appears to be getting better rather then worse. His health is better, his behavior is much better, he shows a great interest in math and reading but hates writing. He’s a social butterfly. Five years ago when we received the diagnosis, we were informed that Jonah would have profound brain damage by the age of 7. Jonah is going to rock this year at camp! The director commented that Jonah looked healthy and happy. Why, is Jonah do...

jonahsjustbegun.blogspot.com

Jonah's Just Begun: 13 years young- Forever Evan

http://jonahsjustbegun.blogspot.com/2015/05/13-years-young-forever-evan.html

Thursday, May 21, 2015. 13 years young- Forever Evan. We have been putting off the major exams for Jonah, waiting for the MPSIIIC and D Natural History Study to start. Not wanting to have to put Jonah through the battery of invasive testing more then we have to. Now I wonder. what else could we be missing? Make a treatment happen. Jonah continues to have a good chance to fight his fate. Https:/ www.crowdrise.com/SSP-MPS-JJB. Forever Evan. We fight in your memory. Thursday, May 21, 2015. MPS and ML forum.