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.

Monday, August 27, 2012

Big Week!

We are officially registered for the 2012 North American CF Conference! I signed us up last night and now just need to get our plan together for the rest of that trip, which includes 3 days in Disney World. It's going to be a long drive (that's right, we are driving!) and it might be exhausting and hectic, but I cannot wait for the moments in between all of that where they are excited and in awe and sad to leave their heroes. Lots of pictures to come!

This Wednesday I am meeting with the office of Senator McConnell. Based on the fact that he is at the Republican National Convention this week, I assume I will be meeting with his Chief of Staff. I'm ok with that. I need to go through all of the prep materials to make sure that I fully grasp the message that we are pushing across, which I believe mainly to be continued support of the FDA and the NIH to help our kids receive access to the drugs and services that they need to survive and thrive.

Drew is doing well. He had an appointment with ENT last week at which I was sure that they were going to recommend surgery again. I was wrong! The topical antibiotic that we had been giving him in his nose seems to have shrank the polyps, and the nasal sprays and rinses that we were doing have been helping to keep him clean and clear. We tried a new nasal rinse, which shocked him to the point of throwing up, so we went back to our spray. Its not the best method, but it might be the best method for a 2 year old.

I'll definitely provide updates after my meeting on Wednesday! I also have our "meet the teacher" preschool conference and a Quality Improvement meeting with the CF Parent Advocate Group this week. Its gonna be a busy one!

Wednesday, August 22, 2012

Here is a very cool presentation that talks a little about the C3N project that I'm working on with the CF Clinic. Keep in mind that this project is being piloted with Crohns and Colitis patients, and thats what this presentation is specific to, but the group I'm working with is a team of CF folks trying integrate it into the CF world. I'm so 100% behind this project and its possibilities for a better future. Check it out!
 (the whole video is interesting, explaining the C3N and then the app called, but if you just want to learn about this really cool app to help improve outcomes, start around minute 22)

Monday, August 13, 2012

I'm back!

The break that I took from blogging for the past several weeks was for several reasons - traveling, sick kids, broken internet connection upon my return home. I feel like so much has been going on that I don't even know where to start!

We had a great time in Philadelphia this summer. Our 3 week trip turned into a 5 week trip, one week of which was spent at Children's Hospital of Philadelphia (CHOP). Drew got sick just as our third week in PA started with something of a stomach bug. It ended up dehydrating him pretty severely to the point of causing a pulmonary exacerbation that landed him on the CF floor of CHOP for a week. We were able to get a PICC line and administer the rest of the two week antibiotic course from my parents, but it did keep us in town a little longer than expected. There are worse places to be stuck than at the grandparents house!

During that little hospital stay, we were supposed to be packing up to make a drive up to Connecticut to have Jake Baptized. Those plans had to change when we had to stay close to home with the PICC line. Very fortunately, we have an awesome family who coordinated to have the Baptism moved to PA and our CT clan was able to make the trip down for the event. Check the Baptism off the list! All in all the trip was really great. While brought to town for unfortunately circumstances, Martin was able to visit with some of our friends that I had seen earlier in our trip. We really got to see so many old friends and family that we don't see very often. It was nice to be back, but alas it was nice to return home as well.

Over the past couple of weeks, I've been working closely with some members of the CF team on some quality improvement projects. One of them, as I mentioned before, is integrating the CF community into the C3N. I am really excited about this project because of the potential it holds for improving outcomes in the CF community. I have actually branched off from the PIQI (Parent Involvement in Quality Improvement) group and partnered with the C3N community as the lead on the integration into CF, and have gained a resource from the C3N whose time will be specifically spent on CF. We are now going to start working our how to present this to the CF community and get people interested. Its so interesting and I really love the time I'm spending on it.

Its "Make Every Breath Count" time again, and I could use any and all help people are willing to offer. I have one meeting already set up with Kentucky Senator Mitch McConnell in a couple of weeks. I've been calling and emailed all kinds of decision makers in my local area to try to share our story and the message of the Cystic Fibrosis Foundation. The support of families affected by Cystic Fibrosis is truly the most effective way to get our Congress to make decisions that will help our kids. You don't have to know a lot about politics to speak from your heart and share your story. These people are in office to represent us, to be our voice in the government. How will they know what's important to us if we don't tell them? We are asking them this year to support increased funding to the Food & Drug Administration (FDA) and to the National Institute of Health (NIH). The funding increases that they voted through last year upon our urging helped to push Kalydeco through the FDA approval process in only 3 months, "an example of how a collaborative, well-informed process can move life-saving therapies to market with greater efficiency".  THREE MONTHS!! That's incredible!  Increased funding would help to ensure that new treatments for serious diseases like cystic fibrosis are reviewed and approved effectively, efficiently, and without delay. The increased funding for the NIH that we were requesting support of last year led to the development of the National Center for Advancing Translational Sciences. NCATS(which is part of the National Institutes of Health), is especially important to people with CF because it seeks innovative ways to remove obstacles to translating basic scientific discoveries into much-needed treatments. All of these are reasons that our decision makers need to hear your voice. I'm as busy as the next guy, but I find the time to do what's really important. 

I got an incredible email today: 
Hello Erin -

My name is ____ and I am writing to you on behalf of Genentech, a member of the Roche Group.

We are interested in learning more about your blog and any insights you may want to share with us on how to connect better with those in the CF community. Genentech is extremely committed to building relationships with people affected by CF.  We would also love to share with you some of the programs Genentech has developed for patients and their families and learn ways we may be able to improve these programs.

If you could let us know your availability so that we could set up some time to chat over the phone that would be great.

Let us know if you have any questions. We look forward to hearing from you soon.

Are you kidding me?! This is like a dream come true! This is like exactly what I want to happen - collaboration between patients and doctors and families and drug companies and whoever else wants to be involved to make things better, to truly improve outcomes. This is exactly what we are working toward with the C3N! If you're reading this and affected by CF in any capacity and could do me a favor and join this blog, I want to see who is reading this, who I'm reaching as just one person. I'm trying to learn how to reach more people. Not like me personally, but me as a member of the CF community - how do we get our information, be it medical, social, emotional, whatever. How can we take all of that information and use it for the good? This is all going to come together, I know it is. It might take some time, and being the ever-so-patient person that I am that might be hard, but it will happen. I will see this through to fruition. I'm meeting with Genetech on the 29th, right after my meeting with Senator McConnell. Wish me luck!

Finally, we had a clinic appointment this morning to follow up from our hospital stay and everything went swimmingly. His culture in the hospital grew pseudomonas (BOO!) and staph so that's why we did the 2 weeks of IV's. In our normal eradication strategy, we are following that up with 28 days on Cipro. Fingers crossed we can make it go away again! Next appointment is ENT next week where I suspect they will say its time for another sinus surgery. Poor kid.