So we are almost 2 weeks away from the 14th Annual SUPER Gala for cystic fibrosis, and I would like to share with you a little story about how we came to raise $2.3 million dollars for CF and lung disease research being done at the University of Calgary, Snyder Institute for Chronic Diseases, Cumming School of Medicine.
After joining a board for fundraising for kids in Nepal with a friend I saw that I could also do that. The experience I gained from that helped me start my own foundation. Now I say “my” loosely because it isn’t just mine.It belongs to every person suffering from lung disease in Calgary and beyond. It is the effort of our board of directors and our volunteers. This little foundation raised $11,000 for its very first event. It was at the Red & White Club and it was attended by 250 guests.
Since then the SFCF has blossomed into a charity to be reckoned with. With the help from Calgary health trust we have raised a lot of money for a disease that is relatively unknown. A disease that is very hard to sell to strangers to get them to support you. We aren’t a cancer charity, or a kids cancer charity, or diabetes or heart and stroke. Those are all charities that have touched someone in some way at some time. CF is considered an orphan disease with only 70000 patients worldwide. This is surprising considering 1 in 25 people carry the gene that causes this disease. What that means though is 2 carriers must meet and if they choose to have children they have a 1 in 4 chance of having a child with CF. So,the odds are pretty high which results in 1 out of every 4000 babies will be born with it in Canada.
What this means is that we have a very steep hill to climb to find donors, sponsors, MC’s, dignitaries, and guests to support our event. We have a base of about 100 awesome guests that attend year after year and that is great. We are trying to build to a base of 300, but its hard.
Every year we are up against the big guns, the Cancers, the Heart and Stroke etc. And it leaves us crumbs. We are very thankful for the sponsors that have decided to support us year after year like Sobeys and EJ Gallo for example. We are also grateful for the new ones that join our fight. The most successful part of our gala is the live and silent auction.We have a core 4 of fabulous volunteers that get us the most amazing items and every year we net about $25K from our auctions alone! That is a big deal.
What I would love to see before my demise is this event becomes an amazing party that Calgarians remember and it sells out every year.
As important as the cancer and heart and stroke charities are, their patients were not born with it. They have not struggled with it from birth and they led productive lives prior to diagnosis and most of them managed to survive it and go on to continue a productive life after diagnosis. Remission/Full Recovery are words NO CF patient will ever get to hear/celebrate. CF just progresses until you need a lung transplant only to avoid death. And then you get to deal with the scariness of post transplant problems and being immuno compromised for the rest of your life which according to the stats is maybe 5-10 years. Transplant is not a cure its just a hold to the inevitable death that comes with every CF person. We need to raise money that gives us a different option to death as our lungs fail.
As I write this I am on the lung transplant list but on hold as I am too healthy to be listed. My team wants me to squeeze as much life out of my airbags as possible before I become active on the list. This is because nothing is guaranteed after transplant. This really is a crappy mind space to live in.
Also as I write this a small group of amazing volunteers are finishing up all that goes into planning a massive marquee event like our Gala. If you would like to attend, I would love to see you. If your company might like to buy a table I am happy to set that up. If you know anyone who would like to sponsor or donate I also would be happy to accommodate that. I learned a long time ago that is you don’t ask you will never know. I also learned that getting a no does not in fact kill me.
The night is focused on our heroes and villains, guests are encouraged to dress up and once at the event they are treated to EJ & Gallo wine, buffet, Sobey’s Super Sweet table, the Lenny & Phyllis Shapiro PhotoBooth, critically acclaimed singer Amy Bishop and her hopeful sinners will help you dance the night away along with Kraze-J DJ.
I promise you it will be a lot of fun and that your attendance not only supports persons like me living with CF but others suffering from lung disease. You can feel very good about that and I would be very happy to thank you in person.
For all the details please visit: http://www.sfcf.ca
I really hope to see some new faces this year!