Category Archives: Advocacy

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

Amelia Rivera Receives Kidney Transplant

Amelia Rivera is home after receiving a kidney transplant. According to USA Today the surgery was done at Children’s Hospital of Philadelphia, where her family previously complained she had previously been denied being considered for a transplant because of her intellectual disability due to Wolf-Hirschorn syndrome. The surgery took place July 3, 2013. Continue reading

Families Raise Awareness and Cash for Research

CAUTION2Families of children with MECP2 Duplication Syndrome and their families have banded together to raise public and professional awareness of the condition, support families,  and to raise money for  critical research.

Here are a few examples of recent news coverage on their activities.

Flemington tricky tray raises $11,190 for MECP2 Duplication Syndrome

Londonderry Township boy inspires ‘ultramarathon’ athlete, who raises money for van

Blake McMillan Trust receive £350 from youngsters Continue reading

Project 401

project 401 logo25 January 2012 Families of individuals with MECP2 Duplication Syndrome have formed Project 401. The goal of the project is to raise $80,000 by April 1, 2012 to make a down payment on a research project that represents an important first step toward treatment for MECP2 Duplication Syndrome. The name project 401 alludes both to the date 4-01 (April First) and the amount ($401) that each of 200 family members is hoping to raise or contribute in the next two months.  Continue reading

Advanced Directives and Intellectual Disabilities: Part 1


I have heard some concerns from parents of children with MECP2 Duplication Syndrome about the appropriateness of “DNR Orders.” I am writing this entry to provide some facts and my opinion about DNRs (Do Not Resuscitate Orders) , DNIs (Do Not Intubate Orders), Advanced Directives, Substituted Judgement, and Best Interests. Continue reading


Pam Albert’s Plea to Tim Tebow

Here is Pam Albert’s Plea to Tim Tebow. She is trying to get this video to be viewed by as many people as possible to help get Tim Tebow on board to support her efforts to raise awareness of MECP2 Duplication Syndrome and raise funds for research. Continue reading

Jay Hegstad: In the News

The Daily News in Longview, Washington, published an article on Jay Hegstad and his family today. The story, “Rare condition poses daily challenge for Longview boy, mom” does a good job of  describing some of the challenges facing families of children with MECP2 duplication syndrome, and especially the additional challenges of single parenting. This article includes a couple of nice pictures of Jay and his mom (NOTE: Continue reading

My Research Wish List

Dear Researchers,

I know that a lot of people are hoping for cure for MECP2 Duplication Syndrome and perhaps a “Cure” for Rett syndrome at the same time. I am not going to claim that I wouldn’t welcome this, it sounds really great, but I have to say that I think it also sounds pretty optimistic to think this will happen within my child’s lifetime or in lifetimes of any of the children or adults who currently have MECP2 Duplication Syndrome.

So, I want to say that I would be very happy to have some research help find some things that will just make living with MECP2 Duplication Syndrome a little easier, just in case the “cure” isn’t at hand. I will start my list with just two things that I think could be achievable”

1. The seizure disorder associated with MECP2 Continue reading

A Personal Matter

6 February 2010- Edmonton, AB, Canada A quick apology to MECP2 Duplication  blog readers. Sorry for neglecting this blog lately. I’ve been distracted by another issue regarding potential cuts to Alberta’s Inclusive Post-Secondary Education programs for adults with intellectual and developmental disabilities. So, I’ve devoted the last week to establishing  a new blog on thre topic of Inclusive Post-Secondary Education. For those icad readers who are interested, it can be found at

Our son who is 19 and has MECP2 Duplication Syndrome attends one of these programs Continue reading