jsrdf.org

webtrixdesigns.net

Latest News | webtrix - we design and host websites that work!

http://www.webtrixdesigns.net/Latest_News

Here are the latest goings-on around here . . . Webtrix frequently announces new project, engagements, service enhancements and other developments around the office. Check back for the latest news the next time you are around! For information on the Webtrix Online Services, please click here. To check our live monitoring system. If you have any questions or comments that you'd like to pass along, simply click here. Webtrix Launches Newly Redesigned Katzkin Leather Website. Technology 5.13.2014. To downlo...

nickandannadietzen.blogspot.com

The Unexpected Journey: October 2014

http://nickandannadietzen.blogspot.com/2014_10_01_archive.html

What is Joubert Syndrome? What is Joubert Syndrome. Dietzenfameveryday2014. {week 43}. Another week has gone by and it's almost November! Here is our week according to Instagram :). Day 296: Parker walking to the bus this morning. Dying over how big his backpack is in comparison to his little body :). Day 297: Friday night fun of wandering through Costco and ending with some frozen yogurt. Living the dream ;). I'll take what I can get these days. Day 300: I fell more in love with my minivan today! I don'...

nickandannadietzen.blogspot.com

The Unexpected Journey: May 2014

http://nickandannadietzen.blogspot.com/2014_05_01_archive.html

What is Joubert Syndrome? What is Joubert Syndrome. In clinic vs. in home therapy. First of all, I want to say THANK YOU for all of your encouraging words and sentiments about baby girl. I was so hesitant to share and so scared of being vulnerable, but it is amazing to see the community we have surrounding and supporting us. Now onto today's post! I was having a conversation with a mother at the therapy clinic the other morning about why we chose to do in clinic therapy as opposed to in home therapy and ...

genetestnow.com

Resources | GeneTestNow! The number 1 source for Jewish Genetic Disease Information

http://genetestnow.com/helpful-resources

National Organizations Promoting Genetic Testing for Jewish Disorders. Einstein Victor Center for the Prevention of Jewish Genetic Diseases http:/ www.victorcenters.org. Center for Jewish Genetics http:/ www.jewishgenetics.org. My Jewish Genetic Health http:/ www.myjewishgenetichealth.com. Jewish Genetic Disease Consortium http:/ www.jewishgeneticdiseases.org. SHORE (Sephardic Health Organization for Referral and Education) http:/ shoreforlife.org. JScreen http:/ www.jscreen.org. National Tay-Sachs and A...

myjourneyintoholland.blogspot.com

My Journey Into Holland: We have a diagnosis

http://myjourneyintoholland.blogspot.com/2012/07/we-have-diagnosis.html

My Journey Into Holland. This is about my journey into "Holland" and my experiences with my daughter, Elizabeth. Elizabeth has multiple disabilties - Dandy Walker Malformation, hepatic fibrosis, vison impairment, seizures, aspiration/swallowing issues, low tone and developmental delay - but she doesn't let that slow her down! We have had a pretty crazy journey, but it's been a learning experience and an absolutely wonderful ride. Saturday, July 21, 2012. We have a diagnosis. View my complete profile.

rarewriter.blogspot.com

The Rare Writer: Joubert Conference 2015 part 1: Old Friends, New Friends, Other Adults, and Pizza

http://rarewriter.blogspot.com/2015/08/joubert-conference-2015-part-1-old.html

Tuesday, 11 August 2015. Joubert Conference 2015 part 1: Old Friends, New Friends, Other Adults, and Pizza. The Foundation's new logo. Very nice! Well, there's been a break in the humidity, so as promised, here's my post about the Chicago conference. I've decided to do this in two parts. This post will be mainly about the conference itself, some of the people, and touring Chicago. Both our families entered the hotel together, with Alden walking right next to me. She was in a pretty close orbit for mo...

nickandannadietzen.blogspot.com

The Unexpected Journey: July 2015

http://nickandannadietzen.blogspot.com/2015_07_01_archive.html

What is Joubert Syndrome? What is Joubert Syndrome. My mind is still buzzing and processing all that we learned and experienced at the conference and it will probably take me a few weeks to be able to put into words what I learned. But the one thing I cannot get out of my head is the amazing families we met. Honestly, I have never ever been surrounded by such amazing individuals. I felt guilt for the times I have felt overwhelmed with my boys needs because they appear to be relatively mild within the spe...

nickandannadietzen.blogspot.com

The Unexpected Journey: December 2014

http://nickandannadietzen.blogspot.com/2014_12_01_archive.html

What is Joubert Syndrome? What is Joubert Syndrome. We are down to the last few days of 2014! How in the world did a year go by so fast? Anyways.here is week 50 of 2014 in our lives through Instagram! Day 345: Selfie tummy time with baby girl! Day 346: This little guy loved decorating Christmas cookies. The whole process of frosting and decorating cookies with a 4 and 2 year old was quite the messy experience.but they had fun! Would much rather stand and bounce than sit or lay. So much fun to watch.

nickandannadietzen.blogspot.com

The Unexpected Journey: November 2014

http://nickandannadietzen.blogspot.com/2014_11_01_archive.html

What is Joubert Syndrome? What is Joubert Syndrome. Our week according to Instagram! Day 317: All three kids were sleeping at the same time today, the house was cleaned this morning and I had nothing that needed to be done immediately. I actually got to sit on the couch and read. By myself. In silence. It was heavenly! Day 318: I got to have a lunch date with this sweet boy after school today. He got chosen to be the example child for physical therapy students today and did amazing! Day 311: This is the ...