The following is an annotated and redacted conversation from the GAMT support group on facebook. https://www.facebook.com/#!/groups/189179557787307/. Some of us participated in the dialogue and wanted to share this with the broader community. I’ve tried to stay true to the meaning and provide transitions between comments from individuals participating in the discussion. Please remember to always [...]
Posts tagged creatine
News for Creatine Deficiency Syndromes
Here in Cincinnati we (University of Cincinnati and Cincinnati Children’s Hospital Medical Center*) are launching the first of its kind diagnostic for all creatine deficiency disorders
“New” for Ten Years.
Everyone knows that Aspirin would never be approved as a drug today because of all the complications
The Mayo Clinic does not care if it dispenses WRONG information
what is out on the web needs to be examined carefully and often can be dangerously inadequate.
Questions from a Parent of a Newly Diagnosed Creatine Transporter Deficiency Child
Joseph, Thank you for the explanation, it’s concise while remaining non-medical , exactly the right dosage of information to help folks like me
200th Blog
As a person who has been trying to “help” people for an entire career. Being on the cusp of producing a drug that will drastically improve the lives of numerous patients is humbling and daunting.
housekeeping on my site
I’m not sure if I have done any housekeeping on my site in a while, so here are some updates. Concerning appearances, I’ve decided to not advertise when I’m traveling for personal security reasons. I’ll blog on conferences I attend after I have been and gone. The web site has seen continuous growth since its [...]
Tell the NIH what research they should support
Currently the NIH’s child care institute is asking for your opinion on what it should pursue. Please tell them what diseases they should focus on. With the right information and right leadership we can help many of the 80,000 people with these disorders.
Developing treatments for creatine deficiency disorders
If you have a family member or patient with one of the creatine deficiency syndromes, especially the creatine transporter deficiency, please join our facebook group (https://www.facebook.com/?ref=home#!/home.php?sk=group_127389967322193&ap=1) where we will keep people apprised of our latest research and development.
Creatine Transporter Deficiency
Some of the most experienced researchers concerning creatine and creatine deficiencies are in Cincinnati working hard to treat these patients
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