Tuesday, January 31, 2012

Awesome news brings me back

I'm back!!! Ok so I needed to take a lil break from blogging I figured Jan would be perfect since there's not to much gong on...

However, there has been so many great things happening. I posted about Dottie she's pretty much AMAZING!!

Then today I woke up to some very exciting news in the CF community. Kalydeco formerly known as Vertex 770 was approved by the FDA 3 months early. You can read more about Kalydeco HERE. I am so excited for all my friends with the mutation G551D about 4% of the CF population have this unique mutation. This pill called "Bluelightening" by my good friend Emily,  is taken twice daly and basically will address the underlying cause of CF for this mutation. So exciting!!!

The mutation I have is Double Delta F508 which is the most common mutation about 90% of the CF population have this. There is currently still research being done to find something for Delta F508 including a second phase trail combining Kalydeco with vertex 809. Kalydeco is opening up doors, its great progress.

So YAY!!! Go out and celebrate!!!! Spread awareness and fundraise we are SO close!

Wednesday, January 11, 2012

Dottie Lessard

This month's Hero of Hope Living with CF, Dottie Lessard, 44, is an inspiring woman whose CF journey has been truly inspirational. Dottie inspires young kids and teenagers with CF to stay fit and empowers them to take control of their health through her foundation "Dottie's Dream." Dottie is also a life coach, speaker and creator of Empower Pro Nutrition as well as an author. Weight lifting is what inspired Dottie to share her passion of exercise with everyone and hopes to continue motivating people with CF to remain active and positive and to never let CF get in their way of fulfilling their dreams.

"When I'm having a bad day I think to myself, why it is still tougher for me? I see people who are doing the same thing as me and it's hard to deal with. I try to be the best person out there and try my best to inspire someone else. I decide my own statistics and I figured out my own way to live my life to the fullest. Knowledge is the most important key and with that power you have the ability to look forward to the future. You have to think to yourself, how can we do this? Don't ever stop pushing and thriving for what you believe in. You have to find a way to stay strong. Live your life, embrace your challenges and gain strength by them. Don't let CF or your transplant define you."

Dottie is SO AMAZING!!!! I have had the pleasure of meeting her in real life, she is so inspiring... a true Hero. To read more about Dottie Click Here

To nominate your Hero Click Here