Category Archives: News

Exempt CBD from Canadian Excise Tax

ExciseTAxAs 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 fin.cannabis-taxation-cannabis.fin@canada.ca 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

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STAT Wunderkind: Dr. Hsiao-Tuan Chao

NEW3Dr. 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.

 

 

 

New Research on the Role of MECP2

flaskResearch newly published in PNAS, Proceedings of the National Academy of Sciences, helps to clarify how the MeCP2 protein regulates genes, and may help provide an explanation of the role of MECP2-related disorders in autism. Researchers at Harvard University and the Washington University School of Medicine published their findings showing that MeCP2 plays a particular role in regulating very long genes in the brain. They found that MeCP2 reduced the activity of genes in proportion to the number of available sites for methylation. Therefore, the longer the gene, the greater the role of MECP2 in regulating the gene, and thus the very long genes in the brain are most sensitive to changes in levels of MeCP2.

Previous research has suggested that the function of very long genes in the brain may be a common denominator in at least many of the underlying causes  of autism. This new finding may suggest that both the underactivity of the MECP2 gene found in Rett syndrome and overactivity of the MECP2 gene found in MECP2 duplication syndrome may result in impaired responsiveness of these very long genes, potentially producing symptoms of autism. Continue reading

Lottery Winning Landlord Directs Rent to Research

News iconThis 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.

Touch, Autism, and MECP2

flaskResearchers 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

Huda Zoghbi & Adrian Bird Honored

shaw31 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.

MeCP2 and the adult brain

mouseA 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

More Research on Cannabidiol & Seizures

flaskSeveral 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

Rare Disease Day 2016

strFebruary 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

Another Big Step Forward with CRISPR

NEW3“Using a previously undescribed approach involving single guide RNA, we successfully removed large genome rearrangement in primary cells of an individual with an X chromosome duplication including MECP2.”

Wojtal, D., Kemaladewi, D. U., Malam, Z., Abdullah, S., Wong, T. W., Hyatt, E., et al. (2016). Spell Checking Nature: Versatility of CRISPR/Cas9 for Developing Treatments for Inherited Disorders. American Journal of Human  Genetics, 98(1), 90-101.

2015 and 2016 have already been marked by some major breakthroughs in potential steps toward treatment of MECP2 Duplication Syndrome. This  report in the American Journal of Human Genetics definitely adds to collection. Continue reading