It is with great sadness that we announce the passing of Erica Nirenberg. Many of you will remember Erica for her kindness and diligence in arranging the room for monthly support group meetings. “She knitted and crocheted for many charitable organizations and kept Dr. Heathcote’s feet warm for many years with handmade slippers!. A truly sweet, generous woman.”
We were excited to attend our first ever Global Genes Rare Disease Conference in Irvine, California September 14-15, 2017. Joining together with many rare disease patient groups, researchers, clinicians and scientists – all working on discovering cures – we were able to share stories and learn strategies to tackle the many challenges facing those with rare diseases.
On Tuesday, September 12, 2017 a delegation from the Canadian PBC Society met with elected MPPs and Ministry of Health staff at Queen’s Park Legislature in Toronto in our first PBC Awareness Day. Meeting in small groups, MPP’s asked lots of questions and PBC members related personal stories and concerns. With a full day of meetings and a lovely lunch in the legislative dining room we are hopeful that our voices have been heard and are needs will be addressed. We plan to be back next year! See more photos in our photo gallery.
On September 6, 2017 in honour of International PBC Day, a group from the USA and Canada met over lunch in Niagara Falls, NY. This was our 2nd annual cross-border lunch. Next year our lunch will be back on the Canadian side of the Falls. We hope you will plan to join us as we share stories and get to know each other. It is always good to talk to people about our rare disease to see what we have in common and understand our differences.
On June 4, The Canadian PBC Society had a tremendous day at our annual fundraising event ‘A Day at the Races’. We had a great turn out as our members and their friends and families joined us to celebrate and discuss all the accomplishments in the PBC community this year. We ate great food, watched amazing races, enjoyed a wonderful silent auction, and all in good company. We would like to thank all of our donors and sponsors, with whom without this event would not be made possible. The Canadian PBC society is grateful for all our supporters and look forward to ‘A Day at the Races’ next year!
On June 2, The Canadian PBC Society was fortunate enough travel to Duncan, BC for our PBC Self Management Workshop. Through this workshop we were able to provide and share information about the disease. We were very happy to see the PBC community in Duncan come out to discuss their thoughts and experiences with us. It was an amazing experience and we would like to thank all of those who participated. A special thanks also goes out to Anne Hartford and Fairlie Mendoza for all their work in facilitating the event.
On June 1, The Canadian PBC Society hosted a dinner meeting to discuss the latest in PBC news. We were lucky enough to have Dr. Andrew Mason as our guest speaker, who was able to provide attendees with invaluable information about the disease. The event was a tremendous success in the discussion about PBC and its causes, treatments, and advancements. At the meeting we had the opportunity to present Dr. Mason with the 2017 Outstanding PBC Researcher award and a cheque for $5,000. The Canadian PBC Society looks forward to continuing to work with Dr. Mason on a variety of projects to improve the quality of life for people living with PBC and we are closely following his research endeavors as we strive for a cure.