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4P- SUPPORT GROUP
Wolf-Hirschhorn Syndrome
* Home
* General 4p- Info »
* 4p- Growth Charts
* Basic Care Recommendations
* For Parents »
* About Us
* Membership Request
* Existing Member Update Form
* Hardship Assistance Fund
* Privacy Policy
* Board Of Directors »
* History
* Contact Us
* For Professionals »
* Scientific Advisory Board
* Basic Care Recommendations
* Registry & Research »
* Current Research Studies
* Parent Pages
* 2021 Gatherings
* 2022 Conference »
* 2022 Prospectus
* 2022 Sponsorship
* 2022 Conference Scholarship
* Photos & Videos
* Donations & Fundraising »
* 4p- Awareness Day »
* Ideas to Spread Awareness
* Social Media Campaign
* Store
* Links
2022 NATIONAL CONFERENCE
2022 National Conference
THANK YOU TO OUR 2022 NATIONAL CONFERENCE SPONSORS!
2022 SPONSORSHIP
4P- HARDSHIP ASSISTANCE FUND
The Board of Directors is very excited and pleased to announce the
establishment of the 4p- Support Group Hardship Assistance Fund. The fund was
created to pass along donations to the 4p- Support Group, that have been
specifically designated, by donors, to “help families.” The Hardship Assistance
Fund is set up to assist [...]
FEATURED ARTICLES
WIN 1 OF 5 $100 AMAZON.COM GIFT CARDS BY PARTICIPATING
The 4p- Support Group is excited to share that, by filling out the updated CoRDS
4p-/Wolf-Hirschhorn syndrome survey, you will be eligible to win 1 of 5 $100
Amazon gift cards. To participate, simply complete the survey ASAP! If you've
already completed the survey (which was launched in July 2014), we ask that you
update your information as … [Read The Rest of This Article...]
CORDS REGISTRY – UPDATED PATIENT SURVEY
Take the 4p-/Wolf-Hirschhorn Syndrome Patient Survey! Research is key. The 4p-
Support Group is thrilled to announce the updated 4p-/Wolf-Hirschhorn syndrome
survey created in partnership with the Coordination of Rare Diseases at Sanford
(CoRDS), an international registry program for individuals with a rare disease.
This is another milestone … [Read The Rest of This Article...]
2019 MEMORIAL
As a continued tradition at our National Conference and Kammy's Kause, we will
be remembering and celebrating individuals with 4p- who have received their
wings. The memorial ceremony at Kammy's Kause will take place on September
14th, 2019. The date and time of the memorial at the 2020 National Conference
is TBA. To ensure we included your … [Read The Rest of This Article...]
4P-SG ONLINE STORE
WHS Awareness adult hoodies, adult 3/4 sleeve tees and youth
3/4 sleeve tees now available! Order HERE … [Read The Rest of This Article...]
2018 NATIONAL CONFERENCE PHOTOS
… [Read The Rest of This Article...]
AMAZONSMILE
Support the 4p- Support Group during the Season of Giving! AmazonSmile is a
simple and automatic way for you to support the 4p- Support Group every time you
shop, at no cost to you. When you shop at smile.amazon.com, you’ll find the
exact same low prices, vast selection and convenient shopping experience as
Amazon.com, with the added bonus … [Read The Rest of This Article...]
More Posts from this Category
FEATURED SIBLING ARTICLES
WHAT ARE SIBSHOPS?
Sibshops acknowledge that being the brother or sister of a person with special
needs is for some a good thing, others a not-so-good thing, and for many,
somewhere in-between. They reflect a belief that brothers and sisters have much
to offer one another — if they are given a chance. Sibshops are a spirited mix
of new games (designed to be unique, … [Read The Rest Of This Article...]
HAPPY 17TH BIRTHDAY RYAN!
*Article appeared in our November 2010 newsletter. By: Tom and Susan Bear Over
the weekend, our middle son - Tyler was given a school Health assignment of
bringing home a computerized baby and caring for this mechanical baby’s need.
Latrisha, as he named her, provided a pretty regular schedule for our son,
Tyler. In fact, he got the … [Read The Rest Of This Article...]
DEVOTED SIBLINGS ARE HONORED
Carol wrote into Kathie Lee and Hoda on the Today Show to honor her two
children, Alex and Rebecca, who have spent most of their lives supporting their
brother, David, who has Wolf-Hirschhorn Syndrome. Broadway performer Capathia
Jenkins performs a special song for the family. Visit msnbc.com for breaking
news, world news, and news about the … [Read The Rest Of This Article...]
SIBLINGS – HOW ARE WE AFFECTED?
The following was written by Maria Sjodin, an older
sibling to Leah Sjodin (4p-). Maria wrote the article for a Families Career
Community Leaders of America in 2006. Thanks you for sharing this with us. I
can say now that being a sibling of a child with 4p- hasn’t always … [Read The
Rest Of This Article...]
More Posts from this Category
ARCHIVE ARTICLES
IS THIS GOING TO BE SAD?
A “Wolf-Hirschhorn family reunion” is a time to share tears and laughter It
wasn’t sad: Enjoying an impromptu get-together at the second Wolf-Hirschhorn
reunion are (from left) Stephanie H., Wanda H., Christopher H., Craig R.
(partial hidden), AJ G., Christine G., Justin F., Kelly G., and Brian J. When
Craig Richardson was diagnosed … [Read More...]
I STEAL HEARTS
Ever since Justine’s birth, I have been told so many
negative things. Justine was born with a rare chromosomal abnormality called
4p- or Wolf-Hirschhorn Syndrome. She was supposedly one in about one hundred in
the country who had this syndrome at that time. Since then I have … [Read
More...]
OUR 2022 NATIONAL CONFERENCE SPONSORS
2022 SPONSORSHIP
MAKE A TAX-DEDUCTIBLE DONATION TO THE 4P- SUPPORT GROUP
GET ENEWS AND UPDATES
Sign-up to received the latest eNews and Updates
VIEW OUR 2018 AWARENESS DAY VIDEO
WEBINAR ON WHS FOR GENETIC COUNSELORS
Beyond the Textbooks for Wolf-Hirschhorn Syndrome: Lessons for Prenatal and
Pediatric Genetic Counselors
Co-hosted by NSGC’s Prenatal Counseling & Ultrasound Anomalies and Pediatric &
Clinical Genetics Special Interest Groups (December 11, 2012)
4p- Support Group
SUPPORT 4P- SUPPORT GROUP WHEN YOU SEARCH THE WEB OR SHOP ONLINE WITH GOODSEARCH
SUGGESTED RESOURCES
* American Heart Association
* Bella's Beds
* Cleft Palate Foundation
* Early Head Start National Resource Center
* Eparent
* Epilepsy and Seziure Information
* Epilepsy Foundation of America
* Finding Camps for Special Needs
* Gracie's Gowns
* Medela Special Needs Feeder
* My Child Without Limits
* National Information Center for Children and Youth with Disabilities
* National Kidney Foundation
* Sibling Support Project – SibShops
* SOFT
* Special Needs Planning
* TASH
* The Taylor Bar – created by a WHS family!
* WaterWay Babies System
* Zero to Three
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