Wednesday, August 29, 2012

We're going places!

Where do I even start! So many things "CF" happened today that I could write a book. Good CF things.  But its late and I'm tired so I will summarize.

As I have mentioned before, the Cystic Fibrosis Foundation is in the midst of their Make Every Breath Count Campaign, where advocates go to meet with political decision makers to share the policy agenda of the Foundation. Today I had the opportunity to meet with the office of Senator Mitch McConnell, the Senate minority (hopefully soon to be majority) leader. As he is currently speaking at the RNC in Tampa, I met with one of the members of his staff. The things that the Cystic Fibrosis Foundation is currently focused on include  promoting innovative research, helping to ensure that CF drugs are safe and effective, and enabling people with CF to gain access to the care and treatment they need to live longer and healthier lives. Last year, during this same campaign, we were making some similar request, and the result of our meetings was the creation of the National Center for Advancing Translational Sciences, a group within the NIH that "helps to advance and develop new and innovative ways to make drug development more efficient in both the public and private sectors and removed hurdles that hinder translation of basic scientific discoveries into much needed treatments". And you know that this group is how we were able to get Kalydeco passed through the FDA in just 3 months. Some drugs take YEARS! We don't have years. Lung disease is irreversible. I need a cure before the lung damage exists. This center exists because we made noise. We told our decision makers what is important to us and why its important and they listened.  I hate more than anything all of the political banter that goes on with people bitching about how this or that has failed or is corrupt and how if only so and so would do x, y, and z things would improve, yet when asked if they've ever done anything about it their answer is no. It's a great feeling to know that sharing your message with your decision makers is making a difference. They represent ME. They are my voice in government and I will continue to talk to whoever will listen. This is the system working.

We got more than just support from Senator McConnell. We go suggestions of different groups and organizations that we could get in front of to share our story and spread our message. I'm going to try to gather more advocates and keep things moving in the right direction. I came out of that meeting on such a high...and then things got even cooler!

I mentioned a while back about the C3N project that I've gotten involved with at Children's. To summarize, its a social network of sorts for a healthcare community, specifically people with a chronic condition. It was created and piloted with Crohn's and Colitis and I think its so cool that I'm hell bent on bringing it to CF. I had gotten a resource in Children's as one member of the C3N team was going to be assigned to working with me on this transition in CF. We had a call last week with some ideas for how to do this. Today I found out that we may have funding from an NIH grant that is going to enable us to work with the University of Cincinnati School of Design, Architecture, Art and Planning (DAAP). How cool!!! And it gets better!! There is a position at the CF National Office called Clinical Affairs VP. This person's job is to facilitate communication and action between the CF Foundation and the CF Clinic (from what I understand). I emailed that man today to see if he would be interested in being a part of this, so that we're not doing all of this work and then going to have to try to convince people to give it a shot, but rather create something with him to be backed by the CF Foundation as a standard of care. His secretary told me that he would get back to me in a couple of weeks as he was out of the office. Not 10 minutes later, I got another email, saying that he's very interested in this project and wants to talk to me about it next week! WINNING!!

The reason that I'm so excited about this is because I feel like I'm doing all that I can to save Drew. I believe that this disease will be cured. I will work however I have to to remove obstacles to that. I will improve his quality of life so that he doesn't even have to know that he's any different than any of his brothers or sisters. I don't care what other people think of me and what I do and how I do it. I do it selflessly and with passion for my son. I'm hopeful.

My day ended with a few hours in the NICU. I participate in a program at Children's NICU called Parent TOUCH (Together Our Understanding Creates Hope). Parents who have had a child in the NICU go to visit parents who currently have children in the NICU. I adore this program. Life is put into perspective every other Wednesday when I go to see some of these sick babies and broken families. We are in dire need a cure for CF, but our situation is hopeful. And I try to portray and pass on that hope to them. It is truly humbling to be a part of the Parent TOUCH program.

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