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Maddie's MissionExperiences of a family along the journey of Pompe Disease.
http://maddiesmission.blogspot.com/
Experiences of a family along the journey of Pompe Disease.
http://maddiesmission.blogspot.com/
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Maddie's Mission | maddiesmission.blogspot.com Reviews
https://maddiesmission.blogspot.com
Experiences of a family along the journey of Pompe Disease.
maddiesmission.blogspot.com
Maddie's Mission
https://maddiesmission.blogspot.com/2015/03/we-are-only-five-days-away-from-2015.html
Experiences of a family along the journey of Pompe Disease. Tuesday, March 24, 2015. We are only five days away from the 2015 MDA Muscle Walk at King of Prussia Mall and have already raised $5,558 for Pompe Disease research! Thank you so much to everyone who has donated to date. If you would still like to donate, please do so via our team page at: http:/ www2.mda.org/site/TR/Walk/General? Remember to gather those last minute costume ideas and we will see you Sunday morning by 8 AM. All You Need Is Love.
Maddie's Mission: Help from The Gators
https://maddiesmission.blogspot.com/2010/07/help-from-gators.html
Experiences of a family along the journey of Pompe Disease. Friday, July 9, 2010. Help from The Gators. Help, I need somebody,. Help, not just anybody,. Help, you know I need someone,. When I was younger, so much younger than today,. I never needed anybody's help in any way. But now these days are gone, I'm not so self assured,. Now I find I've changed my mind and opened up the doors. Help me if you can, I'm feeling down. And I do appreciate you being round. Help me, get my feet back on the ground,.
Maddie's Mission: Valuable References
https://maddiesmission.blogspot.com/p/reference-information.html
Experiences of a family along the journey of Pompe Disease. PLEASE FIND A FEW LINKS BELOW WITH VALUABLE INFORMATION. Pompe disease and Pharmaceutical Companies. Http:/ www.bmrn.com/patients-physicians/pompe-disease.php. Acid Maltase Deficiency Association (AMDA). International Pompe Association (IPA). Association for Glycogen Storage Disease (AGSD). United Pompe Foundation (UPF). Running for Rare Diseases. Advocacy and support services. Muscular Dystrophy Association (MDA). Parent to Parent (P2P) USA.
Maddie's Mission: All the Songs
https://maddiesmission.blogspot.com/p/all-songs.html
Experiences of a family along the journey of Pompe Disease. For those of you who enjoy music like I do, here is a list of all the songs I've used on the blog. If you have the time, be sure to visit iTunes or YouTube and check them out. I've even created a running iTunes playlist! It's a passion of mine and lots of fun! Also, I've included the dates of the posts so you can quickly find them if interested. Thanks for following our story! December 26, 2009: The Beatles, "The Long and Winding Road". August 2...
Maddie's Mission: Dec 26, 2009
https://maddiesmission.blogspot.com/2009_12_26_archive.html
Experiences of a family along the journey of Pompe Disease. Saturday, December 26, 2009. The Long and Winding Road to Diagnosis. The long and winding road. That leads to your door. I've seen that road before. It always leads me hereLead me to your door. Hello all. Thank you so much to everyone who has visited Maddie’s blog to date. We are humbled by the response and empowered by all the positive comments. I thought it might be helpful to briefly explain how we got here, so here we go…. All the best,.
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Girl in Motion | Living with Pompe Disease | Page 5
http://www.pompegirlinmotion.com/page/5
April 10, 2013 6:42 pm. Last Thursday the amazing team at Shands arranged a meetup for several Pompe patients and their families. Because this is such a rare disease, it comforting to be able to interact with others who know exactly what I am going through. I feel truly privileged to be part of this network of health care providers and friends. A couple of the people I met have their own blogs. Actually, they are the ones who inspired me to create Girl in Motion. April 10, 2013 6:38 pm. The web component...
ERT | Girl in Motion
http://www.pompegirlinmotion.com/category/ert
Life as a lab rat. February 9, 2016 5:30 pm. I have been hit up to participate in six research studies within the past year. Only once have I said no. It’s for the benefit of science, getting one step closer to finding a cure, etc. But I am starting to feel more like a lab rat than a human being. I am hesitant to give that up and risk setbacks. Not to mention the huge time commitment commonly associated with these trials. We are talking about 44 hour observation periods, hourly blood draws, long ...I am ...
Girl in Motion | Living with Pompe Disease | Page 2
http://www.pompegirlinmotion.com/page/2
I’m an MA! January 15, 2015 2:27 pm. I hope everyone had a lovely holiday. Mine was full of friends, family and exciting events. Probably the coolest moment for me was graduation. After four and a half years, I finally completed my master’s degree! It always felt like such a distant goal that I never imagined what it would feel like to finish. Well, now I know. Haha! December 8, 2014 10:20 am. With so many doctors appointments, tests, medical supplies- it can be overwhelming trying to keep track of it al...
M.E.G.'s Confessional | My Mystery Disease is Pompe | Page 2
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My Mystery Disease is Pompe. 2011: A Look Back. As the curtain closes on another year, it is time to quickly look back before moving forward. I know, how cliché right? 2011 was a productive and exciting year for me. It was filled with a fair bit of travel, a lot of which centered around Pompe patient advocacy. The year concluded with me receiving my 42nd Lumizyme infusion and a few new stamps in my passport. I spoke at patient meeting in Atlanta, Georgia for Genzyme. The trip to Atlanta also gave me ...
Recommended Links - New Zealand Pompe Network
http://nzpompenetwork.weebly.com/recommended-links.html
New Zealand Pompe Network. What is Pompe Disease? Current News National and International. The following are links which provide excellent. Information about Pompe Disease. For something really cool, check out this video on Youtube! This is what is known as a " Flash Mob. Genzyme has a shared commitment with the worldwide rare disease community: to raise the awareness of rare diseases. New Zealand Pompe Network. Muscular Dystrophy Association of NZ. ClinicalTrials.gov is a registry and. Thank you for vis...
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Maddie's Minions Sock Monsters-Adventures in Socks | Sock creations and other wonders
Maddie's Minions Sock Monsters-Adventures in Socks. Sock creations and other wonders. About Maddie’s Minons. Adventures in DIY cleaning supplies. June 20, 2012. Taking care of Minions is hard work. February 26, 2012. Minion Maddie, is 10 years old, cute as any stuffed minion and a daily inspiration. Minion J is well older (almost x 5! Here it is the recipe:. 1 cup Washing Soda. 1 bar grated Fels Naptha Laundry Soap. I tried this on cold because I was a little skeptical about it disolving, but it did!
Maddie's Minis
Add some fun and exciting things here. Friday, October 18, 2013. This page has moved. Please visit my new page Studio 118. Thursday, April 5, 2012. Monthly Giveaway - CA$H - April May 2012 (Click Title To Enter). 160; April thru May. 160; Kitsch Twenty Two. 160; You will win $15 CASH and a pair of guitar pick money earrings! You must have a paypal account to enter). And, here is the really sweet part.as of today, Maddies Minis and More. By 6/1/12, if we reach 350 fans, $5 more. Saturday, March 31, 2012.
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Maddies Miniature Tack and Misty Meadow Miniature Horses. Maddie's Mini Tack on FACEBOOK. Misty Meadow Miniature Horses on FACEBOOK. Misty Meadow Miniature Horses. Madeline and Arthur Peifer. Dancing Cloud Cherokee Star.
Maddie's Minute
Maddie shares a minute of her life in this flat world of ours. Wednesday, December 12, 2007. Visit: http:/ www.maddiesminute.com/. I've done it. I've been talking about it for months and I've finally done it. I purchased my first domain name. I've exported all posts and comments from blogger. I've installed Wordpress 2.3.1. I've installed several themes I'm playing with. I've installed a new ClustrMap! I'm learning so bear with me! Posted by Maddie's Minute @ 5:25 AM. Links to this post. There are about ...
Maddie's Minute
Maddie’s School Page. Amelia’s Moments Blog. Maddie’s School Page. Amelia’s Moments Blog. Far far away, behind the word mountains, far from the countries Vokalia and Consonantia, there live the blind texts Read More. Far far away, behind the word mountains, far from the countries Vokalia and Consonantia, there live the blind texts Read More. Far far away, behind the word mountains, far from the countries Vokalia and Consonantia, there live the blind texts Read More. Enter your email address:. 8211; Poste...
Maddie's Mission
Experiences of a family along the journey of Pompe Disease. Sunday, December 4, 2016. It's been quite a while since I've posted anything on Maddie's Mission, but I am pretty sure it is time to put pen back to paper. Until then, I would like to share a few old posts to remind people of our story. This one came to mind due the recent kindness of Maddie's friends and teachers who go out of their way to listen, understand, and support when she needs it most. Posted by Matt and Donna Crowley. Turn, Turn, Turn.
Maddie's Mission
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The Life of a Herm
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Maddie's Mitten March | Providing Winter Clothing to Those in Need.
Providing Winter Clothing to Those in Need. Providing Winter Clothing to Those in Need. Maddie's Mitten March. Featured page description text : use the page excerpt or set your own custom text in the Customizr screen. Read more ». Featured page description text : use the page excerpt or set your own custom text in the Customizr screen. Read more ». Featured page description text : use the page excerpt or set your own custom text in the Customizr screen. Read more ». Middot; 2015 Maddie's Mitten March.
Maddie's Recipe Talk
Grab a mocha and sit down for some fun and read about yummy recipes! Friday, August 12, 2011. Cream together, one at a time 2 1/2 cups flour. 1 cup shortening or butter 1/2 cup dry cocoa. 1 3/4 cups sugar 1 1/2 tsp baking soda. 1 tsp vanilla 1 tsp salt. 3 eggs, separated. Blend in the yolks. Beat whites until stiff, then fold in). 1 cup cold water. 1/3 cup pureed tomatoes. Mix dry mixture into creamy mixture. Bake in two greased and floured 81/2 inch round pans at 350 degrees for 35 to 40 minutes. Finall...
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