Conversation about the new provincial FASD Website

I recently had the pleasure speaking at length with Jo-Anne Robertson of Health Nexus, project manager of the new provincial FASD website, anticipated to go live in late fall of this year.  For someone who freely admits she knew almost nothing about FASD when she took on this project, she has remarkedly connected with an outstanding circle of advisors.  Within the conversation, it became obvious she is connected with the top three FASD research organizations in Canada which is significant because just about every new piece of Canadian FASD research coming out now is coming from one of these three organizations.  She is connected with four extremely experienced, leading medical practitioners from within this province and consults regularly with one of them.  She speaks constantly to two of the most experienced, knowledgeable service providers in the province who represent the city and the rural/north interests.  Finally, she has several of the loudest caregiver and youth advocates in the province meeting regularly to give her feedback on the quality of the website.  She shared with me her biggest fear is that she would get feedback that the quality of the website was lacking.  It was clear this project is more than a job for her.  She really sees this as her mission and her way to contributing to this cause.  She did pass along two requests.  One, they have just completed a review of all the available material to ensure all the material uses research-based information and the feedback they have received from the youth is it is very text-based.  She said it is very difficult to find research-based video material that gives advice and direction to youth living with FASD in an engaging manner.  If you know of sources or potentially even create it, please pass that information along to this blog.  The second request is this blog earlier passed out a notice that if you wanted to be notified when the website goes live, to click on a link contained within a flyer.  The link was wrong, so the flyer has been attached again with the correct link.

The Rural FASD Support Network recently soft-launched its fundraising campaign.  While the Network is anticipating funding from Health Nexus later this year to support its Caregiver Support Group, it is fundraising for other reasons.  As can be seen from its Facebook page, its caregiver membership has grown from four to 23 in six weeks.  Most of its membership are joining a group for the first time and are in various states of success.  The Rural FASD Support Network is aware of great conversations with Education Minister Thompson and Housing and Municipal Affairs Minister Clark and has been told they are getting an audience with the Premier.  Accommodation and Travel Costs associated with this advocacy is paid out of pocket by its membership.  There is also a desire to provide child care for its 19 new members at the monthly support group meeting and provide a live interactive video feed to its members who can't physically attend.  With our launch in three weeks, we wanted to give the option to contribute financially to those who wanted to help in that fashion.  As a result, we have launched a Go Fund Me page with 100% of the donations going to those three purposes.  https://www.gofundme.com/rural-fasd-support-network?sharetype=teams&member=649854&rcid=r01-15351970023-3b0636e28f9e4e74&pc=ot_co_campmgmt_w

And a big thank you to all who have already donated.

We are anticipating attendance at our Sept 15 launch to be around 50 people including service providers from the local Health unit, the Mental Health unit, local schools, local police, local FASD Key Workers, the church hosting us, local municipal officials, and Minister Steve Clark.  Hopefully, the live stream will work and you are certainly welcomed to watch on Sept 15 from 10:30 to 11:30am on https://www.facebook.com/groups/RuralFASDOntario/?ref=bookmarks

Tanya Eichler is presenting on "How to recognize when someone is living with FASD."  and Wendy Reed and Malcolm McIntosh will share their stories for the first time ever about their teenage son and adult daughter. 

Finally, lots happening the next couple weeks again.  We are meeting with MPP Hillier on Tuesday and the initial Parent Support Group meeting with Health Nexus, Situation Table Coordinator Stephanie Gray on Friday about funding possibilities, Judy Kay from Thunder Bay to find out what they are doing, an article in the Hometown News coming out, Lake 88 doing a feature on the launch the following week, and of course the walk on Parliament Hill Sept 9.  If interested, I'm coming out of hiding and speaking at the local Ottawa Adopt4Life chapter Sept 20.  I recently came across the Alberta prevalence report done by Dr. Ospina where she found potentially 52% of all children currently in Alberta foster care are living with FASD.  http://fasd.alberta.ca/documents/Systematic_Prevalence_Report_FASD.pdf  Adopt4Life and we have discovered with so many of our children being adopted, a strong relationship between us is vital.  The province recently increased their funding so if you don't have a local support group for your adopted child, please feel free to reach out to them as well.  http://www.adopt4life.com/become-a-member/

FASD Ontario Website Update #2 CORRECTION In the latest website update #2, the link to sign up to be notified when the website goes live was wrong and it sent you to a blank page. My apologies for any confusion this may have caused. Please use this link to be notified when the final website goes live in late 2018.