rareundiagnosed.org
Advisory Board - RUN
https://rareundiagnosed.org/advisory-board
Recent Posts & St. RUN’s NBA Initiative: NBA Teams to Host Rare and Undiagnosed Families! March 3, 2017. Rachel Nielsen: Harmons Cooking School Experience from Make-A-Wish. March 3, 2017. The RUN Advisory Board Mission. Raise awareness for families with children afflicted with undiagnosed or rare diagnosed conditions. Urge insurance companies to reimburse genome sequencing in clinical settings. Network with researchers, insurance providers, and industry stakeholders to meet these families’ needs. Chairpe...
irunutah.com
Blog – I Run Utah
http://www.irunutah.com/blog
Zion’s Children of Haiti. On May 4, 2015. Recognizing this wonderful event that will be occurring May 9th, I want to dive in and show what this race is all about. Funds for this race are contributed to the following in Haiti:. Providing education for children on a regular yearly basis. Plans for an after-school program, including tutoring and teaching technical skills to the children. Building a primary and secondary school in Gonaïves, which can be a model for other schools. Upcoming Runs for a Cause.
daveandshannonnorton.blogspot.com
The Norton Family: 6 months, Today
http://daveandshannonnorton.blogspot.com/2014/01/6-months-today.html
Friday, January 17, 2014. 6 months, Today. Six months ago today our hearts literally broke. Someday I will get to writing about that whole experience, someday. Today, I miss Paxton. With every cell of my body. I ache to hold his body and kiss his cheeks, ear, on down to his neck; stroke his hair; and feel his hand on my face. I miss seeing him wake up so happy and look towards the window, as if it would tell him what kind of a day it would be. It was so fun for me, too! He was so perfect and peaceful and...
ngly1.org
Connect | NGLY1
http://www.ngly1.org/connect
Curing, treating and connecting. The more we connect, the closer we are to finding a cure. Every story matters. Meet Canadian NGLY1 teenager, Emily Jane. Bertrand is the first ever NGLY1 patient. Tim’s mom made the first NGLY1 “Blognosis”. Grace making waves for NGLY1 Children. Meet the mighty Mason from Delaware. Splore: recreational adventures, trips, experiences, and programs for individuals with physical and/or cognitive disabilities. UT, AZ, TX, MN). Little Miss Hannah Foundation. Adaptive recreatio...
countrylifecare.com
Blog - Country Life Care
http://countrylifecare.com/blog
Angel’s Hands Foundation back to school clothing drive. July 21, 2016. Angel’s Hands Foundation primary purpose is to assist with medically related expenses. Who: Angel’s Hands Foundation https:/ angelshands.org/. What: AHF is seeking new and gently used clothing and school supplies to stock a free back to school store for children affected by rare diseases and their siblings. When: Donations are due by Aug 5. Where: Donations may be left in the locker at the entry to Country Life Care Center. Because Ha...
zoomautosutah.blogspot.com
On the Road With Zoom: August 2013
http://zoomautosutah.blogspot.com/2013_08_01_archive.html
Sharing news about new and used vehicles, Utah car dealers and Utah's car culture. Friday, August 30, 2013. SLC Police Department's Newly Restored 1975 Nova to Debut at Cruzin' For Cops Car Show. A great way to spend some time this Labor Day weekend - check out the 1st Annual Cruzin' For Cops car and motorcycle show in downtown Salt Lake City, Utah. A highlight of the show will be the Salt Lake City Police Department's newly restored 1975 Nova that officer's used to race at Bonneville Raceway. Kicks off ...
daveandshannonnorton.blogspot.com
The Norton Family: 1/12/14 - 1/19/14
http://daveandshannonnorton.blogspot.com/2014_01_12_archive.html
Friday, January 17, 2014. 6 months, Today. Six months ago today our hearts literally broke. Someday I will get to writing about that whole experience, someday. Today, I miss Paxton. With every cell of my body. I ache to hold his body and kiss his cheeks, ear, on down to his neck; stroke his hair; and feel his hand on my face. I miss seeing him wake up so happy and look towards the window, as if it would tell him what kind of a day it would be. It was so fun for me, too! He was so perfect and peaceful and...
daveandshannonnorton.blogspot.com
The Norton Family: Longing
http://daveandshannonnorton.blogspot.com/2012/05/longing.html
Tuesday, May 1, 2012. Ah, that is more about me than it is about Paxton. I have had such the urge to WRITE for so long. It is just so hard to do it. How do you other SNM (Special Needs Mommies) do it? Seriously, I am so grateful and appreciate people reaching out so much. I am loving meeting new people who share similar experiences and stories and emotions. It is a great blessing to make those connections and strengthen each other. I just never get time on my computer! Don't you people sleep? Paxton coul...
SOCIAL ENGAGEMENT