January 19, 2014 mcfadyena

Hope, Sweat & Breathe- A Yoga Fundraiser for the MPS II Research Fund

Yoga-Poster - MPS II FUND - Revised With SponsorsDetails of Hope, Sweat & Breathe:
Doors open at 12pm
12:30-1:15pm Vinyasa Yoga with Mike Nichols
1:30-2:15pm Vinyasa Yoga with Chris Duggan
2:30-3:15 Restorative Yoga with Lindsay Collins
3:30-4:15pm Family Yoga with Melissa Donohoe (grandparents welcome!)
**** 4:15 pm Raffle for a Diamond Necklace!
There is yoga for EVERYONE, including: newbies and long-times practitioners, the young, the old and the in between, the injured, the healthy and the healing. You can come for one or all of the classes and if you don’t have kids of your own for family yoga, you can bring nieces and nephews, neighbours or friends!
Peter Jack Rainbird will be playing live music during the event AND don’t forget your yoga mat or be among the first 100 people to donate $100 to get a Lululemon mat!
4:30pm Singing of Happy Birthday to Trey with cupcakes for everyone and special guests coming to sing!
Organizing a fundraiser for research for a cure for the rare and progressive disease that affects your son has a lot of attachments. There is so MUCH. So much hope that we will find a cure in Trey’s lifetime. So much overwhelming gratitude for the people who come on board to support our cause because what that cause means to me is the life and survival of my son. When people support our cause, it feels like my heart is pulled out of my chest and into their bodies. It’s really hard to describe, but it’s like each person who supports our cause becomes a part of me, a part of my family, a part of my heart.
On the flipside, I used to get really disappointed and angry and resentful when people didn’t donate or attend our event or volunteer or donate an auction item or do SOMETHING. I have let that go though. Over the years I have realized that some don’t understand the significance of an event like this for me, and that’s okay. Or they don’t know us well enough for them to prioritize an event like this in their lives. And that’s okay too.
I’ve been doing fundraisers for research into MPS II or Hunter Syndrome for seven years. When I began fundraising, I put everything I had into the events: all my waking time and energy, every bit of my heart, and more. I think it felt like if I didn’t do everything I humanly could, I wasn’t doing enough. I wasn’t working hard enough to save Trey. Put bluntly, that approach didn’t work. It was so overwhelming and exhausting and emotional, I could have been diagnosed as bipolar. I was high, I was low, you couldn’t bank on which I was at any given moment, and I didn’t stop.
Hope, Sweat and Breathe is my first event in two and a half years. There are many reasons why I took such a long hiatus, but one was to regroup: as a mom, as a person, as an event organizer. This is my first event with a new perspective. I want to organize an awesome event, but not at the expense of my family and my sanity. I want to organize an event that I can breathe and love who I am throughout the event. When I decided to jump back into fundraising after a hiatus, it was with the clarity that I would not lose my mind over it. What a better way than to combine yoga into a fundraiser. It’s like a constant reminder of what’s important.
Hope, Sweat and Breathe is also my first event to combine two of the forces that move me most in life. MPS and yoga. If you get right down to it, MPS is raw. It’s real. It forces you to look death in the eyes. Upon diagnosis, without tools to support me, MPS was eating me alive. I didn’t know how to live (and sometimes I still struggle) until I found yoga. Yoga is about breathing and letting go. Really letting go (like sometimes sobbing through class). It is also about finding strength and playfulness. Although it is not forced, if you get right down to yoga, like MPS, it is also raw and real. Yoga is about facing your demons. Demons like MPS. Putting yoga and MPS together in an event for me just fits.
It turns out that this fundraiser is taking place on Trey’s 10th birthday. Double digits is a big deal to any parent, but to Ryan and I, on a birthday Ryan and I were told Trey might not make it to, this event is a big deal.
The event is an even bigger deal because the people who are teaching at this event- my teachers- I have a piece of them in my heart, so it means a lot that they will be there. It’s also really awesome because these teachers of mine are such amazing people, that they are surrounded by other amazing people who are coming on board to support Hope, Sweat and Breathe. I am looking so forward to being in a room with such inspiring and gifted people.
This event is full of all the reasons I practice yoga and full of the effects of how MPS has transformed me. It is real and full of heart. There is no bullshit, no pretending, no forgery. Just real human beings working with our imperfections to be the fullest, most whole people we can be on this earth, supporting each other and growing ourselves and each other with every chance we get. I can’t wait. It’s going to be breathtaking.


We want to hear from you! Send us your story so we can share it with the world. Every person and family battling Hunter Syndrome has a unique story to tell - one of bravery, resilience, and perseverance. We'll share all stories online here and on our social media feeds!