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9pminus.org

9pminus.org - The international support network for parents and caregivers

The international support network for parents and caregivers

http://www.9pminus.org/

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9pminus.org - The international support network for parents and caregivers | 9pminus.org Reviews
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The international support network for parents and caregivers
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1 9pminus org
2 membership services@9pminus org
3 chromosome 9pminus network
4 about the network
5 board of directors
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7 blog
8 about 9pminus syndrome
9 membership
10 enrollment request form
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9pminus.org - The international support network for parents and caregivers | 9pminus.org Reviews

https://9pminus.org

The international support network for parents and caregivers

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1

Board of Directors - 9pminus.org

http://9pminus.org/board

The international support network for parents and caregivers. Contact us via email:. Contact us via phone:. Or write to us at:. Tillson, NY 12486. Mission & History. What is 9pminus Syndrome? About Dr. Omar Alfi, MD. How the Network Can Help Your Family. How to Join the 9pminus Network. Enrolled Member Update Form. Unique’s Disorder Leaflets. President, Jacqueline Bair – jbair@9pminus.org. Vice President, Jill Holtzmann – jholtzmann@9pminus.org. Secretary, Terri Aguado – taguado@9pminus.org.

2

About Dr. Omar Alfi, MD - 9pminus.org

http://9pminus.org/dr-omar-alfi

The international support network for parents and caregivers. Contact us via email:. Contact us via phone:. Or write to us at:. Tillson, NY 12486. Mission & History. What is 9pminus Syndrome? About Dr. Omar Alfi, MD. How the Network Can Help Your Family. How to Join the 9pminus Network. Enrolled Member Update Form. Unique’s Disorder Leaflets. About Dr. Omar Alfi, MD. In 1970, Dr. Alfi joined Children’s Hospital of Los Angeles and was named Head of Division of Medical Genetics. In addition to being a phys...

3

What is 9pminus Syndrome? - 9pminus.org

http://9pminus.org/what-is-9pminus

The international support network for parents and caregivers. Contact us via email:. Contact us via phone:. Or write to us at:. Tillson, NY 12486. Mission & History. What is 9pminus Syndrome? About Dr. Omar Alfi, MD. How the Network Can Help Your Family. How to Join the 9pminus Network. Enrolled Member Update Form. Unique’s Disorder Leaflets. What is 9pminus Syndrome? 9p Deletion Syndrome is a very rare chromosome abnormality that reportedly occurs in 1 in 50,000 births. The size of the deletion often de...

4

Blog - 9pminus.org

http://9pminus.org/blog

The international support network for parents and caregivers. Contact us via email:. Contact us via phone:. Or write to us at:. Tillson, NY 12486. Mission & History. What is 9pminus Syndrome? About Dr. Omar Alfi, MD. How the Network Can Help Your Family. How to Join the 9pminus Network. Enrolled Member Update Form. Unique’s Disorder Leaflets. August 5, 2014. The welcome sign that the hotel and conference center put up for us! Good day, 9p-Minus families and supporters! What did everyone else think? Our b...

5

For International Families - 9pminus.org

http://9pminus.org/international-families

The international support network for parents and caregivers. Contact us via email:. Contact us via phone:. Or write to us at:. Tillson, NY 12486. Mission & History. What is 9pminus Syndrome? About Dr. Omar Alfi, MD. How the Network Can Help Your Family. How to Join the 9pminus Network. Enrolled Member Update Form. Unique’s Disorder Leaflets. Powered by Google Translate. The Chromosome 9pminus Network is a nonprofit, parent-based support group with a mission to improve the lives of families affected by 9...

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milesformaddie.blogspot.com milesformaddie.blogspot.com

Miles for Maddie: Day 5 Eureka to Ely

http://milesformaddie.blogspot.com/2009/10/day-5-eureka-to-ely.html

Thursday, October 1, 2009. Day 5 Eureka to Ely. Senior Van, jump on here! Day 5 – October 1, 2009. Total Miles: 78.2. Riding Time: 5 hours 12 minutes. Total Time: 7 hours. Elevation Gain 4200’. Weather: Sunny skies, starting temperature 22 degrees (WTF! Temperature upon arrival (2:30pm) was 43 degrees. Total Water bottles consumed: 10 (5 for the pee queen/5 for the directionally challenged – we improved our cold water drinking skills today. Is there anything colder than well diggers? As we mentioned in o...

milesformaddie.blogspot.com milesformaddie.blogspot.com

Miles for Maddie: Day 3 Fallon to Austin

http://milesformaddie.blogspot.com/2009/09/day-3.html

Tuesday, September 29, 2009. Day 3 Fallon to Austin. Shoe Tree (See our link at the bottom for more shoe tree pictures! Riding Time: 7 hours 22 minutes. Total Time: 8 hours 15 minutes. Elevation Gain 5700’. Weather: Partly cloudy skies, avg temp 60 degrees, winds…we will talk later. Total Water bottles consumed: 15 (8 for the pee queen/7 for the directionally challenge). Thank you for all your comments! Up and at em’ at 4:45am on our bikes at 6:45am. Do you think Theresa could lose her bike gloves? After...

milesformaddie.blogspot.com milesformaddie.blogspot.com

Miles for Maddie: Day 2 – September 28

http://milesformaddie.blogspot.com/2009/09/day-2-september-28.html

Monday, September 28, 2009. Day 2 – September 28. May the wind be at your back - we discovered what a real tail wind is today…45 miles worth! Total miles today - 91. 6hrs total time out, 4hrs 34 mins (riding time). Total water bottles consumed 11.5 (7 for the pee queen/4.5 for the directionally challenged). Bike the West crew continues to amaze us with their great support, food, and hospitality. Is it possible to get lost on Hwy 50? You can check out some photos on our Web Album:. You are INCREDIBLE....

milesformaddie.blogspot.com milesformaddie.blogspot.com

Miles for Maddie: Day 4 Austin to Eureka …brrrrrrrrrrrrrrrrrrrrrr

http://milesformaddie.blogspot.com/2009/09/day-4-austin-to-eureka.html

Wednesday, September 30, 2009. Day 4 Austin to Eureka …brrrrrrrrrrrrrrrrrrrrrr. Yes that is snow! Total Miles: 70.9. Riding Time: 4 hours 14 minutes. Total Time: 5 hours 45 minutes. Elevation Gain 2800’. Weather: Partly sunny skies, average temp 35-40 (colder than a well diggers you know what). Total Water bottles consumed: 9 (5 for the pee queen/4 for the directionally challenge – it’s really hard to drink cold water when it’s freezing outside). Lunch was the best ever! By the way, did we mention it was...

milesformaddie.blogspot.com milesformaddie.blogspot.com

Miles for Maddie: September 2009

http://milesformaddie.blogspot.com/2009_09_01_archive.html

Wednesday, September 30, 2009. Day 4 Austin to Eureka …brrrrrrrrrrrrrrrrrrrrrr. Yes that is snow! Total Miles: 70.9. Riding Time: 4 hours 14 minutes. Total Time: 5 hours 45 minutes. Elevation Gain 2800’. Weather: Partly sunny skies, average temp 35-40 (colder than a well diggers you know what). Total Water bottles consumed: 9 (5 for the pee queen/4 for the directionally challenge – it’s really hard to drink cold water when it’s freezing outside). Lunch was the best ever! By the way, did we mention it was...

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Website Design and Digital Marketing. St Louis, Missouri. Google Adwords for Non-Profits. You are here: Home. Worry Free Website Portfolio. Worry Free Website Portfolio. Website design and development form the cornerstone of digital marketing for your business. Done correctly, it can pay for itself with new leads and closed business – often in a matter of months. To learn about a website project, or visit the website itself, simply click on the image below. Northwest Chamber of Commerce. Worry Free Marke...

milesformaddie.blogspot.com milesformaddie.blogspot.com

Miles for Maddie: Day 6 Ely to Utah Border

http://milesformaddie.blogspot.com/2009/10/day-6-exhausted.html

Friday, October 2, 2009. Day 6 Ely to Utah Border. After 420 miles WE FINISHED and reached the Utah border - woohoo! An amazing final day of riding and we are exhausted. Stay tuned for a complete recap of our day 6 tomorrow. In the mean time, here are the pictures: http:/ picasaweb.google.com/lh/sredir? Love you all,. Subscribe to: Post Comments (Atom). The lonliest Road in America. Jersey cost is $60.00 each. (They fit true to size.). Http:/ www.9pminus.org/. Our Family Back Home. The Water Baby Ginger.

milesformaddie.blogspot.com milesformaddie.blogspot.com

Miles for Maddie: Home Sweet Home

http://milesformaddie.blogspot.com/2009/10/home-sweet-home.html

Sunday, October 4, 2009. Riding Time: 26 hours 51 minutes. Time Touring: 34 hours 45 minutes. Elevation Climbed: 19, 430’. Water Bottles Consumed: 56.5. A few special thanks to some folks who we couldn’t have survived the week without! Bike the West Crew:. Trevor (a.k.a. “gear” guy) – for being the best bellhop ever. Mike (a.k.a. “iron chef” and “chief meteorologist”) – for fueling us and forecasting the landscape. Josh (a.k.a. “SAG stud”) – for doing it all. Curtis and Chuck - for making it all possible.

milesformaddie.blogspot.com milesformaddie.blogspot.com

Miles for Maddie: Dancing Queens

http://milesformaddie.blogspot.com/2009/10/dancing-queens.html

Saturday, October 3, 2009. Day 6 – October 2, 2009. Ely to Utah Border. Total Miles: 82.1. Riding Time: 5 hours 29 minutes. Total Time: 7 hours 45 minutes. Elevation Gain 4400’. Weather: Sunny skies, starting temperature 17 degrees, temperature at the Utah border 65 degrees. Total Water bottles consumed: 11 (6 for the pee queen/5 for the directionally challenged). After everyone rode through the finish line the EMT of Bordertown treated us to a home cooked lasagna meal with all the trimmings. Followi...

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9pminus.org - The international support network for parents and caregivers

The international support network for parents and caregivers. Contact us via email:. Contact us via phone:. Or write to us at:. Appleton, WI 54912. Mission & History. What is 9pminus Syndrome? About Dr. Omar Alfi, MD. How the Network Can Help Your Family. How to Join the 9pminus Network. Unique’s Disorder Leaflets. Welcome to the Chromosome 9pminus Network Website! Dr Omar Alfi, MD. The Chromosome 9pminus Network is a nonprofit, parent-based support group with a mission to improve the lives of families a...

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