Over the years, there has been considerable discussion of whether the seizure disorder associated with MEP2 Duplication Syndrome should be categorized as Lennox-Gastaut syndrome. Up until very recently, this has been mostly an academic discussion, but a recent development means that this argument may have important practical implication for individuals with MECP2 Duplication Syndrome and their families. On June 25, 2018, the FDA approved Cannabidiol treatment for individuals with Lennox-Gastaut, (and Dravet syndromes) and having a diagnosis of Lennox-Gastaut may affect availability and cost to individuals MECP2 duplication syndrome. So, here are some facts to consider. Continue reading
THANK YOU TO THE GOVERNMENT OF CANADA FOR LISTENING TO THIS POST AND ALL OF THE OTHER VOICES ASKING FOR EXEMPTION OF CBD! This year the government agreed and exempted CBD.
As currently proposed, the Canadian Cannabis Excise Tax will create an excessive economic burden on many sick and disabled Canadians. In many cases, it will add an additional $1000 or year or more to the existing federal taxes. The stated rationale for this tax is that recreational users may claim to be medical users in order to avoid the excise tax on recreational marijuana. This rationale, however, cannot be appropriately applied to Cannabidiol (CBD) oil, because CBD is not psychotropic, and CBD oil has no potential for recreational use. Therefore, adding an excise tax to CBD oils that contain only small amounts of THC, serves no purpose other than to create an additional financial burden of sick and disabled Canadians.
If you agree, please e-mail the Department of Finance Canada at email@example.com and tell them:
Exempt CBD oils that contain less than 3mg/ml of THC from the Canadian Cannabis Excise Tax. Taxing Low-THC CBD oils is unfair and unnecessary.
The Department of Finance will accept comments on the proposed tax until 7 December 2017 and you can view the entire proposal here: http://www.fin.gc.ca/n17/data/17-114_1-eng.asp
Let the Canadian Department of Finance know what you think about the proposed excise tax. Feel free to quote or draw on any part of this blog post, if that is helpful. Also feel free to share this post with anyone who may be interested.
For more details on why CBD should be exempted, see below:
About me I want to be clear about the fact that I have a personal stake in this matter. Our son’s doctor has prescribed CBD oil to help manage intractable epilepsy Continue reading
Dr. Hsiao-Tuan Chao, one of the Jan and Dan Duncan Neurological Research Institute at Texas Children’s Hospital research team studying MECP2 duplication syndrome and related disorders, has been named as a 2017 STAT Wunderkind. This honor is awarded each year to recognize up-and-coming medical and biotechnology researchers whose careers are blossoming and are expected to be North America’s next generation of leading scientists. This year 27 “Wunderkinds” were selected for this honor out of more than 300 nominations.
Congratulations to Dr. Chao.
This is a great story from the Courier in Scotland. Gillian Bayford, a landlord who won the lottery, is sharing her good fortune. In addition to supporting the remodeling of his home to support Blake McMillan’s special needs, she is directing all the rent paid by Blake’s family to support research on MECP2 duplication syndrome, the condition which affects Blake. For more info, see the original story in the Courier.
It is great to see creative ways that people are finding to support this cause.
Researchers at Harvard University are suggesting a new theory of autism. They are raising the possibility that atypical neurological responses to touch can play an important role in developing symptoms of autism, and suggesting that abnormal levels of MeCP2 levels in cells that respond to touch can be critical to the development of symptoms of autism.
Experiments with a number of types of genetically engineered laboratory mice, they found autistic-like behavior developed in those without MECP2 activity in touch cells, but not if normal activity was present in touch cells but not in other cells in the body. There are a number of cautions in interpreting this finding and the associated theory, but there are also a number of general observations that make this theory enticing. Continue reading
31 May 2016 Today it was announced in Hong Kong that 2106 Shaw Prize in Life Sciences and Medicine will be shared by Professors Huda Zoghbi and Adrian Bird:
for their discovery of the genes and the encoded proteins that recognize one chemical modification of the DNA of chromosomes that influences gene control as the basis of the developmental disorder Rett syndrome.
We are extremely fortunate to have these outstanding researchers working on MECP2 related disorders. The Shaw prize is the latest in a long list of honors recognizing their contributions to the field.
A recent study looks at the effects of the MeCP2 protein levels on adult brains. Although this study looked at blocking MeCP2 [similar to Rett syndrome and the opposite of MECP2 duplication syndrome], the fact that it showed different kinds of responses depending on the developmental maturity of the lab mice, suggests that the most critical role of the MeCP2 protein may be in the function of the adult brain.
This finding is consistent with Continue reading
Several new studies provide encouraging results about the use of cannabidiol (CBD) oil to treat seizure disorders that are not controlled by other medications. Research also, however, points toward important cautions.
Already in 2016,at least nine studies have been published on CBD and seizures. Two 2016 studies, one from Israel (Tzadok et al.,, 2016) and one the United States (Devinsky et al., 2016) are generally reporting particularly encouraging results. This is not to say the others are negative, just less relevant. The two discussed here are important because they include some results Continue reading
February 29, 2016 is International Rare Disease Day. While by definition individual rare disorders are uncommon, collectively more than 6,000 rare diseases affect a large segment of the population. For more information, see http://www.rarediseaseday.org/events/world
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