Exciting CF News

This is exciting news for us. Meghan has the form DF508.
This new medicine will potentially put her form of CF into a remission stage.


CF Foundation Announces Initiation of Phase 2 Trial of VX-809
March 25, 2009 The Cystic Fibrosis Foundation announced today the initiation of a Phase 2a clinical trial for VX-809, a compound designed to treat the basic defect in cystic fibrosis—a faulty gene and its protein product, called CFTR. Developed by Vertex Pharmaceuticals Incorporated, in collaboration with the Foundation, VX-809 is known as a “corrector” and aims to move defective CFTR protein to its proper place in the cell. The protein is then poised to move chloride out of the cell and potentially allow it to function as a healthy cell would. The Phase 2a trial is designed primarily to evaluate the safety and tolerability of multiple doses of VX-809 in patients with CF. In addition to assessing safety, the trial will also evaluate whether VX-809 affects key measures of how well the protein is functioning. The trial is expected to enroll approximately 90 patients with the Delta F508 mutation of CF, the most common mutation in CF patients. "Today, CF treatment involves the use of multiple drugs that address the symptoms of CF, however no therapy currently exists that targets the underlying cause of this disease,” said Robert J. Beall, Ph.D., president and CEO of the CF Foundation. “We are encouraged by Vertex’s rapid progress in advancing two novel therapies aimed at correcting the basic defect in CF. We believe that VX-770, which is expected to enter registration studies in the first half of this year, and VX-809, which today entered Phase 2 clinical development, have the potential to play a significant role in changing the future course of this disease for people with CF.” "The advancement of VX-809 into Phase 2 development demonstrates our commitment to improve care for patients with CF," said Freda Lewis-Hall, M.D., executive vice president, medicines development, and chief medical officer of Vertex. "This Phase 2a trial is designed primarily to provide a safety, tolerability and pharmacokinetic evaluation for VX-809. Any additional signals observed in this trial, including changes in sweat chloride and nasal potential difference, that indicate VX-809 has an effect on measures of CFTR function may be highly informative and encouraging for planning future clinical trials with VX-809."
VX-809 was discovered as part of a collaboration between Vertex Pharmaceuticals and Cystic Fibrosis Foundation Therapeutics, Inc., the nonprofit affiliate of the Foundation. Initiated in 1998, the Foundation has invested $76 million in CF research and development efforts with Vertex.

My Friends Birthday

Today is my friend Paiges Birthday. I lost my friend Paige to cancer a little over a year ago. I still have so many good memories of her. I know she is in heaven and is making everyone smile and is watching us. I still have a piece of candy she gave me 3 days before she died. I will always save it. I wear Pink for her and I dance for her. I miss her. I love her.

Meghan

Wishstock 09

Wishstock 09 to Benefit the
Make A Wish foundaton of NH.
The allstar band was made up by
Skunk Baxter, John Montgomery, Fran Sheehan,
Barry Goodereau, Kenny Arronnoff, Charlie Farren,
Mike Mangini.


What an awesome concert.

You all have to come next year.


Jeffery "Skunk" Baxter from the Doobie Brothers
and Meghan at Wishstock 09






Mike Montgomery, Fran Sheehan, Skunk Baxter.


Mike Mangini. World's Fastest Drummer.

Today Meghan was a guest speaker at The Demers Group

breakfast that raises funds for Children's Hospital at

Dartmouth. She sat at the head table with Governor Lynch.

The breakfast today was dedicated to a dear friend of Meghan's

that lost her battle to cancer a few months ago. Sammy Rotman.

We did not know this before hand but we were do honored to be there

to remember and honor Sammy.

Meghan and Governor Lynch

Governor Lynch, Meghan, Jim Demers

Meghan and Jim Demers

NH Firefighters Bagpipes

Our Hero...Sammy Rotman

New Bunny "Peanut Butter"

Save some money here.

Hi
Check out Angel Food Ministries. I save so much money here.
The food is good. It may be worth a look.

Sue

Meghan Oct. 14th 2008

This is hand drawn by Chirs Demarest

He comes into CHaD takes photos of the kids

and then goes home and sketches them.

I wished you could see the original.

He does this all probono for the kids. He

is looking for a company to fund him so

he can continue as it is a full time thing for

him. I can't even tell you how cool it is to

have a portrait like this. He says he would

charge $200-$500 depending on what is in tture. I will add a few others at the bottom.

CHaD Billboard

The new CHaD Billboard on the coca cola curve just after exit 6 on 293 south. Do you know anyone on here?

Some Cool Nurses

Danielle

Sarah

Emily H.

It ended up a draw.

Mollly giving kisses and reading a teen magazine with me.

Grey's Anatomy here I come.

This is wicked fun.

More fun at CHaD

This is Meghan and Samantha (Sam). They had a contest to see who could fit the most gum in their mouth. Guess who has the bigger mouth?

You will never guess who called me.

My friend Dennis Walters and his new dog Mr. Bucky called. Mr. Bucky can add and answer questions with answers that are numbers.

Well Mr. Bucky was asked by Meghan how much is 3 + 2 and he barked out 5. She asked how many tires on a golf cart he barked 4. How many fingers on a humans hand ..he barked 5. He was asked how old are you..he barked 1.

You can google Dennis Walters Golf Show. His story is awesome.

I can't wait to go see them again.

Mommy and Meghan being goofy at CHaD

Just being goofy at the hospital while watching the game.

Joanne O'keefe

Check this out. Meghan has a special vistor drive from Cape Cod to Dartmouth to deliver a special gift.

Check out my Barack Obama shirt and hat.

Plus I might get to go to the White House this April.

Meghan is at CHaD for two weeks. Her lung functions are down and running a slight fever now. So she is getting IV meds and lots of extra physical therapies. More to come.

Cool Pics of happiness

Is this cool or what. My friend was there.