Monday, February 28, 2011

The BIG One Hand!!

My McNoodle is 5 today!!! Where did the time go.... Seems like yesterday she was just barely crawling.

I am so proud to be her Aunt. She is such a lil princess. We had a sleepover last weekend and had the best time. I love that her favorite dog in the world is a pug and she just loves the babies so much and they absolutely adore her. They are so pooped when she leaves they don't really sleep thru the night when she stays over because they are always checking on her. I don't really sleep thru the night either with kicky kickerson sleeping next to me ;)

I also love the Makena loves hearts and she loves her nick name that I gave her McNoodle. She is quite the ham when ever her picture is being taken and has a variety of poses that she loves to do. We love doing arts and crafts and playing vet and I love when we play beauty parlor :) Two peas in a pod I tell ya!

Today she is getting her ears pierced and then we are having a family bday party for her. I can't wait to give her her gifts. Ill take a pictures for sure, we are going to be pretty cute in our new matching pug shirts :)

Wednesday, February 23, 2011

VERY good news....

This morning, the CFF announced very exciting results from the clinical study of a new treatment for cystic fibrosis.  The oral drug, known as VX-770, targets the defective protein that causes CF.

A Phase 3 trial evaluated patients who carry at least one copy of a CF mutation called G551D.

Patients who took the drug showed marked improvements in a number of key measures of the disease, including improved lung function, fewer pulmonary exacerbations, patient-reported reductions in respiratory symptoms and weight gain.

In addition, average sweat chloride levels of patients on VX-770 dropped toward normal -- indicating the drug is impacting the underlying defect in CF.

VX-770 is being developed by Vertex Pharmaceuticals, and was discovered in collaboration with the CF Foundation. 

To read more about VX-770 click here

Monday, February 21, 2011

Kathleen Burke

Heroes of Hope Panel member and cystic fibrosis (CF) advocate Isabel Stenzel Byrnes sat down with our newest Hero with CF, Kathleen Burke, 20, to listen to her story and hear how she has been successful in balancing schoolwork as a junior at Drew University, volunteering, her theater classes and taking care of herself. Kathleen is being recognized for her attitude and many theater accomplishments, including winning the Young Rep Outstanding Senior Award in 2008 and the 2010 Robert Oxnam President’s Playwriting Award.
Isa: I’m so excited to talk to you and learn about your amazing, full life. Can you describe for me a typical day for you in college?
Kathleen: I am theater major in college, and so I go to rehearsal daily, and I spend time writing plays. I’m in a show right now so pretty much my schedule is like one long “to do” list: do treatment, go to class, go to rehearsal, do treatment, do homework, eat, go to class, go to rehearsal, do treatment, go to bed. Our rehearsals are 4 hours a night everyday through Tuesday-Friday and 6 hours on Saturday and Sunday. That’s all I have time for, but I’m really enjoying being so busy.
To read more of this fabulous interview click HERE

To nominate your hero click HERE

Friday, February 18, 2011

Im Baaaack!

Ok so if anyone is still out there... Thanks for being patient with me.

I needed a tiny break from cyber world, not just my blog but Face book too.

Logging in blogging it was beginning to become a chore rather then a fun outlet for me so I thought it was time to take a much needed break. I am excited to catch back up on all your blogs and see what has been going on. I have been a lil out of the loop. My goal is to at least post once a week if not more so be checking back.

So far 11 is going great for me. I have been staying busy and knock on wood staying healthy, even tho it seems like everyone around me has been hit by the plague. If you were to only see my hands you would think they were the hands of a 90 year old. Dry, wrinkly but VERY clean ;)

Have a great weekend everyone!