The Changing Minds Foundation (CMF) held its first Conference on July 23-24, in Houston, TX, to discuss available treatments for the different intellectual disabilities that affect persons with Down syndrome and to present the ongoing research at Stanford University Down Syndrome Center.
Various testimonies of families and professionals, who work with those using the Changing Minds Protocol, were presented, as well as, findings from researchers at Stanford University that investigate drugs to enhance memory and learning in individuals with Down syndrome by testing on the DS mouse model.
The Changing Minds Protocol was established by Teresa Cody DDS, the mother of a child with DS. Teresa worked with other mothers around the world via email and they researched the Internet to find an array of scientific studies. The studies using DS mouse models showed improvement in the mouse's ability to learn and remember. The protocol, that uses FDA approved medicines includes, B 12, Folic Acid, Ginkgo Biloba, Prozac (Fluoxetine), Phosphatidylcholine, Body Bio Balanced Oil and Focalin XR (or another ADHD medication).
Changing Minds Foundation estimates that around 200 families use the CMF protocol worldwide, or at least parts of it, and the large majority of these families have observed great advances in their child's development with no appreciable side effects. According to some presenters, some children have started the medicines as young as 3 months old and have been showing signs of development of a typical child. Pictures and videos of the treated children were shown to illustrate improvements.
Joanne Mothes, a teacher with 38 years of experience tutors 30 pupils with Down syndrome in Columbus Ohio. 14 of them are on the CMF protocol and 16 are not. She said that the difference between the two groups is remarkable. The title of her talk was 'Draw a line in the Sand'. According to Joanne, children that use the protocol are more attentive, more verbal, learn faster, and remember what they learn. She also said she noticed good results comparing the students to themselves, before and after starting the CMF protocol.
Research:
Scientists from Stanford University Down Syndrome Research Center, Craig Heller, PhD., Craig Garner, PhD, and Dan Wetmore, PhD talked about their research using PTZ (Pentylenetetrazol) and how that drug had similar effects to Ginkgo Biloba, which is currently being used in the CMF protocol. It acts on the GABA receptors of the cell, controlling the balance between excitation and inhibition, aiming to regulate these 2 stimuli, that are out of balance in mice and presumably individuals with Down syndrome. As the researchers described, too much inhibition can lead to retardation and even coma, while excess excitation can cause hyperactivity to seizures. Drs. Heller, Garner and Wetmore all affirmed that this research is advanced, but it will take time and funds to carry out clinical trials on PTZ. At this time, they estimate that it will take 10 years to get FDA approval.
The Stanford team, as well as, other participants of the conference, stressed the need for families to engage in fundraising and applying political pressure in order to implement more research. They also pointed out that it is crucial that the medical community, especially pediatric, psychiatric and neurological physicians be informed and get involved by working with patients that wish to use the treatments already available.
More information:
http://www.changingmindsfoundation.org
http://dsresearch.stanford.edu
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