Meghan and Mackenzie at the Demi Lavato Concert
Friday, October 30, 2009
Saturday, October 24, 2009
Wednesday, October 7, 2009
Wednesday, September 30, 2009
Thursday, September 10, 2009
Saturday, August 22, 2009
Meghan volunteering
at a fundraiser for the Make A Wish Foundation.
The Northeast Exotic Car Show raised @ $4000 at
this event today.
I am proud of her because she came for a little while
even though she really didn't feel well.
Below is Noah Wheeler. He
at a fundraiser for the Make A Wish Foundation.
The Northeast Exotic Car Show raised @ $4000 at
this event today.
I am proud of her because she came for a little while
even though she really didn't feel well.
Below is Noah Wheeler. He
won 2nd place best in show for his catagory.
It was an honor to meet him.
Wednesday, August 5, 2009
Saturday, August 1, 2009
Saturday, July 18, 2009
Friday, July 17, 2009
NO HOSPITAL
Hello All
Well we thought we were going to have to be admitted to the hospital (CHaD) , but we don't have to go. They went into Meghan with a scope today to see if there was an infection in the sinuses, but didn't see any. Only a couple of small polyps that are not any concern. So why all the pain people ask? Well with Cystic Fibrosis Meghan has thick mucus that forms in her lungs and sinuses. So we are going to do some steroid nasal spray, saline rinse with some antibiotics mixed with it and hope it clears a little. Thanks for all your notes, thoughts, and prayers.
Sue
Well we thought we were going to have to be admitted to the hospital (CHaD) , but we don't have to go. They went into Meghan with a scope today to see if there was an infection in the sinuses, but didn't see any. Only a couple of small polyps that are not any concern. So why all the pain people ask? Well with Cystic Fibrosis Meghan has thick mucus that forms in her lungs and sinuses. So we are going to do some steroid nasal spray, saline rinse with some antibiotics mixed with it and hope it clears a little. Thanks for all your notes, thoughts, and prayers.
Sue
Monday, July 13, 2009
Sunday, July 12, 2009
Meghan at Tap City , NYC 2009
The below link should bring you to her Youtube video of her dancing
at Tap City last week.
http://www.youtube.com/watch?v=Gx7GSshz6jQ
at Tap City last week.
http://www.youtube.com/watch?v=Gx7GSshz6jQ
Tuesday, July 7, 2009
Wednesday, June 24, 2009
http://www.danceforgood.com
Hi
The above web page is my friends. His name is Dario and he is awesome tap dancer. You can watch him on youtube. So keep this site in mind and check it out. Meghan
Hi
The above web page is my friends. His name is Dario and he is awesome tap dancer. You can watch him on youtube. So keep this site in mind and check it out. Meghan
Tuesday, June 23, 2009
Meghan's CHaD Video Wins an Award.
Meghan had a blast doing this. I may figure out how to post it but not tonight I am tired.
Hi Sharon:
Just wanted to let you know that the CHaD video we made for St. Patrick’s Day was selected for a New England Cable Television Public Service award! I’m sure this was mostly due to how wonderful Megan was, as the host and tour guide. I doubt if many other entries were hosted by 11-year-olds, so I’m sure that made the piece really stand out.
Would you be able to share her email address with me, so I could let her know how much I appreciate her helping me to achieve this professional recognition? I know there are all sorts of confidentiality issues, so if you are more comfortable just forwarding this email on to her, that would be great, too.
Thanks so much for all your help with the video. Again, I really appreciate it. Hope CHaD gets some publicity and recognition from the video being shown at the awards ceremony in July. The ceremony is held at the annual NECTA convention in RI but NH legislators and gov’t officials usually attend.
Hope you have a great summer…..warmer and drier than it has been so far.
Lori
Lori Murphy
Lori Murphy
Producer/Editor
Comcast-Video Support Team
66 Emerson St.
Hi Sharon:
Just wanted to let you know that the CHaD video we made for St. Patrick’s Day was selected for a New England Cable Television Public Service award! I’m sure this was mostly due to how wonderful Megan was, as the host and tour guide. I doubt if many other entries were hosted by 11-year-olds, so I’m sure that made the piece really stand out.
Would you be able to share her email address with me, so I could let her know how much I appreciate her helping me to achieve this professional recognition? I know there are all sorts of confidentiality issues, so if you are more comfortable just forwarding this email on to her, that would be great, too.
Thanks so much for all your help with the video. Again, I really appreciate it. Hope CHaD gets some publicity and recognition from the video being shown at the awards ceremony in July. The ceremony is held at the annual NECTA convention in RI but NH legislators and gov’t officials usually attend.
Hope you have a great summer…..warmer and drier than it has been so far.
Lori
Lori Murphy
Lori Murphy
Producer/Editor
Comcast-Video Support Team
66 Emerson St.
Monday, May 18, 2009
Meghan is very sad. Her Grammie Lynn(on left) passed away last week. We spent the weekend in CT with Papa Russ and Nana (on right). Nana will be 99 in oct. It was a hard weekend for Meghan but she is a tough little girl and was very strong especially for Papa and Nana. I am very proud of her. We did get to meet some cousins we hadn't met and it was fun to be with them for the weekend. We miss Grammie Lynne but we know she is watching and protecting us.
We always had alot of laughs and we will still have many more and Grammie will be laughing right along with us.
Saturday, May 2, 2009
Rachel Rendina...Miss Rockingham
Miss Rockingham ..Rachel Rendina wins the bathing suit competition in the Miss NH Pagent
Friday May 1st. Tonight are the finals.
Rachel is a very good friend of Meghan's and we are very proud of Rachel.
Friday, April 24, 2009
Friday, March 27, 2009
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.
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.
Thursday, March 26, 2009
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
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