Category Archives: disability

Exempt CBD from Canadian Excise Tax


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 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:

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

Parents must be parents first

Family Together - Parents and Kids, WheelchairToday, I was reminded of something that I wrote 20 years ago back in 1995. I want to share it again with parents of kids with disabilities and with professionals who work with families.  I found this quote from me on someone else’s website, I am glad that someone was kind enough to preserve it:

Sometimes it is more important to be a parent than a paraprofessional. Parents are expected to be physical therapists, nurses, behavior modifiers, communication therapists and so on. Sometimes paid professionals tell us, “you don’t need us; you know how to do all this stuff.”  Sometimes we have to tell them, “I’m sorry but we’re too busy being parents to do all these other jobs.” 

The unique role of parents must be recognized, respected, and cultivated. Parents need to be parents first, and being good parents is the most important job in the world… -Dick Sobsey

Here is the point that I was trying to make… Continue reading


Walking at various ages

This compilation of home videos illustrates one individual with MECP2 Duplication Syndrome and his walking at various ages over a period of two decades. It indicates his progression and regression of skills. Of course, every individual with MECP2 Duplication Syndrome is different, many will never walk and some will begin walking younger, develop even more advanced skills, and maintain them longer. We are sad to see some of Dave’s skills slipping away but grateful for what he was able to achieve and what he still can do. I think Dave’s walking, however, is fairly typical for those who do develop walking.

Far From the Tree

FFTTJust a week ago, I posted an entry on the Agony and Ecstasy of parenting a child with severe and multiple disabilities. The next day, a friend was telling me about a remarkable interview he heard on CBC radio with Andre Solomon, author of Far From the Tree: Parents, Children and the Search for Identity, that dealt with some of the same things. I was interested enough to check out one of many interviews with Solomon on the the internet, and I was 50 impressed with the interview that I bought the 996-page book.

Since this book has been a best seller for about a year now, I am a little embarrassed that I am just hearing about it. I haven’t finished it yet, but I have read enough to say that it is truly wonderful and important reading for anyone who wants to understand parents of children with intensive needs or any parent whose child is exceptional in some significant way Continue reading

US Announces New Administration for Community Living

The United States has announced a significant reorganization of disability and aging administration under Health and Human Services. The new Administration for Community Living with a mission of “enhancing and improving the broad range of supports that individuals with disabilities and seniors may need to live with respect and dignity as full members of their communities.” This new agency combines three former organizational units: the Administration on Aging, the Office on Disability, and the Administration on Developmental Disabilities. Continue reading

In the News from Washington State

Families band together to unlock mysteries of rare genetic disorder

by Cathy Zimmerman in Washington’s The Daily News is about Jay Hegstad-Enneberg and the 401 Project. It includes a link to the project. Here is a brief quote:

In January, those 200 families banded together to raise $236,000, the amount necessary to fund research directed at unlocking the mysteries of MECP2 at Baylor College of Medicine in Houston.

The group calls itself “The 401 Project,” because $401 is the amount each family must raise to fund the research.

Click here for the whole story…

MECP2 Triplication Syndrome

As the name implies, some individuals with extra copies of the MECP2 gene, actually more than one extra copy. This affects a small percentage of cases. While these individuals are commonly identified as having MECP2 Duplication Syndrome, they are sometimes identified as having MECP2 Triplication Syndrome. Both labels are correct. They do, after all, have a duplicate copy of the MECP2 gene, but they also have an additional duplicate. Continue reading

How many children and adults have MECP2 Duplication Syndrome?

6 February 2012 This is a question that is frequently asked, but it is not simple to answer. There seems to be a lot of misunderstanding, and many believe that there have only been about 100 confirmed cases diagnosed so far. In fact there are a lot more than that, and no one has a precise count. In earlier years, 2005 to 2007 or 2008. There were only a few labs that were testing for MECP2 Duplication and so it might have been possible to simply add up totals from these labs to get a number. Since then, however, the number of labs doing this testing has grown rapidly and the number of tests performed has sky rocketed. There can be no doubt that the total number of cases diagnosed worldwide is now more than 1,000 and may be as high as several thousand. This number is increasing every day. Continue reading