"Don't just try...strive"

Wednesday, October 26, 2016

Wednesday, August 24, 2016

Sunday, July 24, 2016

Saturday, March 5, 2016

Welcome Kathleen Grace Maguire!

Welcome to the family!
 
Kathleen 'Katie' Grace Maguire

March 5, 2016
7:26pm
8lbs 2oz
20in
Welcomed with loving arms by her parents and delighted siblings Claire, Maggie and Patrick!
 

Monday, February 29, 2016

2016 - Team Claire for a Cure - Sunday, May 22, Chicago (Diversey Harbor)

Walk - Donate - Support
 
 
8 years ago, was our first CFF Great Strides walk!  This year we are excited to walk on May 22, 2016 along the beautiful Chicago lakeshore (Diversey Harbor, Chicago, IL (Fullerton and Cannon Dr. near Lincoln Park Zoo).  

We look forward to a wonderful sunny day and hope to see you there! 

 Walk Details and Update
This will be the 8th year that Team Claire for a Cure is walking to help find a cure for CF. A special thanks to everyone who has supported us/walked over the years – your continued support gives us hope that within the next two years we will have a cure for the type of CF that she has.
Claire will turn 7 right before the walk this year.

Since we started walking for a cure in 2009 she has grown into a delightful and inquisitive child and is hugged everyday by her sister Maggie 5, little brother Patrick who is 2, and soon to be #4 due in March. This year she was a mighty-mite hockey player with her sister, became the champion of the waterslides on vacation, and continued with her Irish Dancing, continues to enjoy nature, art and building things, and enjoys all aspects of 1st Grade.

Ups/Downs - Early access to a Cure?
This past summer we were screened for participation in a clinical trial for a drug called Orkambi(already approved for adults), which was developed for her 'type' of CF - we went in for a few days of tests and were cautiously optimistic about her getting enrolled - this is the drug we have been waiting for. 
After the tests were done and we were set to go to our 'trial Day 1 appointment' we got a call saying we didn't meet the targets for the trial.  (WHAT?)   So we will have to wait - wait for the doctors and scientists to finish FDA trials for ages 6-12 and pray things go as they should.  In the meantime, we have just continued with our daily routine and keeping her baseline as awesome as we can.
....The silver lining is reason she didn't get into the trial....one(out of the countless screening tests) - just one was 'too good' - her lungs tested as too healthy for the trial.  As parents we gave eachother a high-five and hug - knowing that the gift of patience is one thing Claire continues to give us every day.

We are dedicated to participating in clinical trials - Claire has participated in 2 since she was 4 months old. Why? We want to move the needle further ahead - in hopes that we can be a catalyst for change and make a difference in the lives of other children fighting against CF - and other genetic diseases. 

Visit our website - page back in time to see how far she has come since she was born in 2009. http://themaguireclan.blogspot.com  

What is CF?
Cystic fibrosis is a life-shortening genetic disease that affects tens of thousands of children and young adults in the United States. Research and care supported by the Cystic Fibrosis Foundation are making a huge difference in the lives of those with CF. Many of the drug-delivery techniques being developed to cure CF will be leveraged for other diseases too!

Thank you for supporting Great Strides! Together, we can make a difference and “add tomorrows” to the lives of those with CF, and hopefully, Claire.

We were honored to participate in the CFF video: http://www.youtube.com/watch?v=N2J3FgYMLkw  

Donate or walk with us this year!

Friday, December 25, 2015

Wednesday, December 23, 2015

Happy 2nd Birthday Patrick!

Happy Birthday to our sweet 2 year old!
He loves hockey, everything is a basketball hoop, loves watching the trains at the station in town and his favorite car is a school bus (or a Zamboni)- and yet he can't go to bed without his sweet bear.  Lucky for every day we get to spend with you!
 

Thursday, July 30, 2015

10th Anniversary

It has been a great 10 years!
 
 




 

Thursday, July 2, 2015

New Drug - Aimed to fix underlying cause of CF FDA Approved!

https://www.cff.org/News/News-Archive/2015/CF-Foundation-Celebrates-FDA-Approval-of-Orkambi-as-Important-Advance-for-the-CF-Community/

This is exciting news for the entire CF community!  As a direct result of your support of the CFF - change is coming!

This new drug is aimed at treating the underlying cause of CF and is targeted for people with a specific CF Genotype (yes there are different 'types of CF genes'). 

The more exciting news is that it is approved for adults with the same genotype as Claire and we are hopeful that the trials aimed to understand impacts in pediatrics are successful and she will gain access to the drug...more to come!

Saturday, May 30, 2015

Ojibwa campout 2015

A wet and fun-filled weekend with the Indian Princesses!  

Sunday, May 17, 2015

Monday, May 11, 2015

7th Great Strides Team Claire for a Cure Walk - Sunday, May 17, 2015

Join us or donate!

 http://fightcf.cff.org/goto/claireforacure


SUNDAY, MAY 17, 2015 - Gillson Park in Wilmette, IL www.wilmettepark.org/lakefront/gillson-park

This will be the 7th year that Team Claire for a Cure is walking to help find a cure for CF. A special thanks to everyone who has supported us/walked over the years – your continued support gives us hope that within the next two years we will have a cure for the type of CF that she has.

Claire will turn 6 right before the walk this year. Since we started walking for a cure in 2009 she has grown into a delightful and inquisitive child and is now joined by her sister Maggie 4 and little brother Patrick. This year she has enjoyed learning how to play tennis, took Irish Dancing, ballet, continued her hockey and swimming lessons, explored the outdoors in summer camp and is now a kindergartner.

We are dedicated to participating in clinical trials - Claire has participated in 2 since she was 4 months old. Why? We want to move the needle further ahead - in hopes that we can be a catalyst for change and make a difference in the lives of other children fighting against CF - and other genetic diseases.  Click here for a research update.

Cystic fibrosis is a life-shortening genetic disease that affects tens of thousands of children and young adults in the United States. Research and care supported by the Cystic Fibrosis Foundation are making a huge difference in the lives of those with CF. Many of the drug-delivery techniques being developed to cure CF will be leveraged for other diseases too!

Thank you for supporting Great Strides! Together, we can make a difference and “add tomorrows” to the lives of those with CF, and hopefully, Claire.

Donate, walk or keep us in your prayers this year!

The  Maguire's

Friday, April 24, 2015

Claire-First tooth!

Patiently waiting for most of kindergarten to lose her first tooth - it finally came out today! 
Claire asked us if she could wait to put it under her pillow so she could show the nurse and her friends at school (the nurse gives the kids a cute "tooth storage" necklace).  She brought it to school Monday and the inevitable happened - she lost it - somewhere in the classroom!  The tooth fairy came Monday night and she was delighted!
 

Wednesday, April 8, 2015

Happy Birthday Claire - 6!

Happy Birthday Claire - looking forward to another exciting year watching you grow into a little lady!

You melt our hearts every day!

 
celebrating April Birthdays Maggie, Claire, Grandma and baby Maeve!

Thursday, April 2, 2015

Happy Birthday Maggie - 4!

Happy Birthday to Maggie!  A great celebration in Florida!

You make every day wonderful and keep us on our toes! 


Wednesday, December 24, 2014

Tuesday, December 2, 2014

#GivingTuesday

2015 Team Claire for a Cure!  - Save the date - Sunday, May 17, 2015

Join us in May or Donate for "Giving Tuesday" today! 

http://fightcf.cff.org/goto/claireforacure  

Wednesday, October 29, 2014

October Mischief



Sunday, July 13, 2014

Thursday, June 26, 2014

Claire and Maggie Dance Camp Performance - Sophia the First - Summer 2014

They made their necklaces(amulets) and all the props/costumes in the mini-camp.

Click here to watch the performance: http://youtu.be/Y-eDFBxqT14



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