Margie’s trip to Manitoba started with the Batten Connect Information Sessions. The goal of these sessions was to teach the community more about Batten disease and the needs of Batten families. The first session was geared toward teachers, administrators, school personnel, therapists, socials workers, and counselors. Margie presented along with three teachers from the James Nisbet School and Batten moms Tara Gair, Janelle Zazalak and moderator, Bev Maxim. The real-life experiences of the parents present drove home, in very important ways the challenges and wisdom of Batten families. The teachers were able to share with their peers the incredible ways they support their Batten student in school and the way the school community rallies behind the whole family.
Later in the day, there was a session for medical professionals and anyone else interested in learning more about how they can support Batten Families. It is important that medical professionals in all fields understand the progression of the disease so they can better help families prepare for the future and get access to the equipment and support they need. The event was coordinated by the Canadian Chapter of BDSRA and Laps for Life.
Batten Connect was featured in the news, follow the link below to watch!
The following Saturday, April 29th was the 6th Annual Laps 4 Life Fun Run and Walk. This walk was started in 2013 and they have two goals. First, to raise money for families in Manitoba affected by Batten disease to help with the financial strain of looking after a loved one with a terminal disease. Second, to raise awareness for Batten disease and educate people about what the disease is, so there is a higher level of understanding in the general public.
In the past 6 years they have been able to raise tens of thousands of dollars for families, coordinate the purchase wheelchairs for families and raise a great deal of awareness about Batten disease.
Pictures of the event can be found at Shutter Bug Photography: Laps 4 Life
The run was also featured on the news,