Yes TWO blogs for Amanda to now read to you this week 🙂 I am feeling so full, inspired and so much to share with you….always xo
Today I was on a two hour call with the MSA Canada, Board of Directors. We sound like such a “pack” lol but really, we are just starting out. Phil is the Director, who lost his brother to MSA. He is such a kind human who is so dedicated to finding a cure for this disease. He is very involved on many different levels and is the one who started the MSA Chapter in Canada.
It is pretty incredible to meet so many different individuals who join these calls. The stories they share. A couple of ladies joined today who are just at the beginning stages with this disgusting disease. There was a young couple on the call from Ontario. Her mother died of MSA. Her husband spoke so passionately about the fundraiser his company was ready to support, all PRE COVID. He talked about his determination to make this happen asap. How wonderful that he is so involved, in honour of his mother in law.
Another lady Val, from Winnipeg. Recently diagnosed with MSA, super passionate about getting the word out there about this disease. She was telling us how her doctor said to her, “See you in 6 months.” No judgement here at all but she feels so alone. She talked about how fucked up this disease is and how no one has ever heard about it. She was awesome. Beth who lost her husband to this disease and Kelly who was also just recently diagnosed. A husband wife duo from Quebec. Watching him advocate for his wife Valerie and the love he has for her is so beautiful. They are making this disease known. Via newspapers, social media, TV interviews – they make quite the team.
So it is pretty cool Karen – we are also talking about getting a support groups going for caregivers, family members, patients and friends. I am really hoping that when we get the first one booked maybe you can take part via FaceTime…right Amanda ??? 🙂 hahaha 🙂 we shall see I think that would be wonderful !!!
These are all the people (minus Mark) who were on my call today xo. All connected because of MSA.
I also want to recognize that it has been 20 years since my friend Erin passed away. You met her several times when you would come out to Vancouver to visit me. She died of Ovarian cancer at the age of 34. She and I were supposed to grow old together. Her dad always said, “I have never seen a more connected group of young girls.”
Yesterday, her dad, posted a tribute to his daughter on Facebook. It was beautiful. In his tribute he mentioned, “You had such a joyful group of friends that even after countless surgeries, your uproarious laughter could be heard echoing down the halls in St. Paul’s and the Vancouver General Hospital.” When I read this it brought back so many memories. Here we all were, in our early 30’s and one of our “girls” was dying. But how fucking awesome, that through the tears, and so many emotions, we found our way to laughter.
Her dad witness the bond we shared. He said to me, “Thank you for all the joy you brought and shared with Erie, through the fun times and the tough times. True friendship is probably the biggest blessing in life.” This I know for sure. I am so very grateful for so many wonderful friendships.
ERIN WE LOVE AND MISS YOU. I think of you often. Please please please make are you have plenty of seats saved for us (your girls) at your table. Red wine please !!!! Love you my friend xo
I love writing to you Karen, thank you Amanda for reading these.
I love you sis,
Here are some beautiful memories of Erin….
And one personal note to a lovely lady that I just found out today is reading my blogs….xoxo
Hi Patricia in Germany !!!!!
I love that you are reading my blog. Your note was so kind xo Jenna and I still talk about you, what an amazing lady you are – thank you for sharing so many beautiful German Traditions with Jenna. Come back and visit us please xoxoxo.
ps. YES always look on the bright side of life xo
Please see link below to the MSA CANADA website. If you know anyone who has this disease and/or is looking for a support system – or simply for more information relating to this disease – please share this site.