Phone: 888-970-0777

   Local Phone: 562-804-4506

   Fax: 562-920-5240

   Email: director@fivepminus.org

    5P- Society
PO Box 268
Lakewood, CA 90714

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Regional Contacts

Below is a list of people that can put you in touch with other families in your geographic area that may have a child close in age to your child. They can also provide informational literature.

The United States
Midwest Joan Steele 618-687-3006 (after 6pm CST)
East Coast Ruthie Liberman 781-861-3962
West Coast Jennifer Wong 916-983-4954
South East Shari Campbell 251-776-6430
Canada
Eastern Canada Christy Hammond 519-425-4404
Western Canada Contact director@fivepminus.org  for referral

5P- Around the World

International Contacts

Many countries around the world have parents and professionals that have dedicated their time to be the first point of contact regarding Cri du Chat Syndrome in their country.  The information below is provided to give parents and health care professionals a direct link in their respective countries to those who can help parents learn and discover more about Cri du Chat Syndrome or 5p– Syndrome.

If your country is not listed and you’d like to be the point of contact, or you have found an error, please contact us at director@fivepminus.org.

Country

Contact

E-Mail

Website or Phone Number
Algeria Lafdjah Fadela and Belkacem Labcen anapath9722@gmail.com +213 0776 48 93 20
Argentia Cecila Requeni or Mariajose Rodriguez crequeni@gmail.com or mariajose@rodrigo.com.ar
Australia Cri du Chat Syndrome of Australia, Inc. info@criduchat.asn.au www.criduchat.asn.au
Belgium Cri du Chat België/Nederland debbievanbroeck@hotmail.com
Brazil Nucleo de Aconselhamento e Pesquisa Cri du Chat contacto@portalcriduchat.com.br www.portalcriduchat.com.br
Bulgaria Polina Nikolova Poli_sat@abv.bg
Canada Brad & Christy Hammond or 5p- Society Hammondeggs404@gmail.com or director@fivepminus.org www.fivepminus.org
China Zhang Yong zhanggrl@126.com
Colombia Adela Castro Castillo adelacastro@gmail.com
Costa Rica Natalia Lopez Zeledon gargui82@hotmail.com 506-60-51-46-93
Denmark Svenska Cri du Chat – Sallskapet Adlersborg11@gmail.com
Ecuador Marcia Vascones Pozo mvascones@bancoamazonas.com
France Daniel Pujolle criduchat@hotmail.fr or sriluur@hotmail.fr
Germany Cri du Chat Germany http://www.5p-syndrom.de/5p-/index.php
Great Britain Cri du Chat Syndrome Support Group admin@criduchat.org.uk www.criduchat.org.uk
Greece Dimitra Kourtidou dk.31101976@gmail.com
Iceland Harpa Dis Ulfarsdottir pall.ini.palsson@gmail.com +35 46 602684
Ireland Cri du Chat Syndrome Support Group admin@cridhchat.org.uk www.criduchat.org.uk
Italy Associazion Bambini Cri du Chat abc@criduchat.it www.criduchat.it
Japan Fumiko Tanaka ftanaka312@gmail.com
Lebanon Samar Alsayed fadisamar110@gmail.com
México Cinco P Menos México mariohmar@gmail.com 01 55 26303095
New Zealand Cri du Chat New Zealand

Jo Ellis

criduchat.info@nzord.org.nz www.criduchat.org.nz
Panama Patricia Gonzalez Domingo patricia@solisgonzalez.com
Poland Michael Rzepka michal.rzepka@gmail.com
Qatar Milagros Rimachi mrimachi@hotmail.com
Serbia Emi Delic +38 16 03104006
Spain Fundacion Sindrome 5p

ASIMAGA

presidenta@fundacionsindrome5p.org

 

presidenta@asimaga.org

www.fundacionsindrome5p.org

 

www.asimaga.org

Slovakia Csilla Szabo cs.szabo@centrum.sk
South Africa Anél Burger aburger@thenct.org.za
Sweden Svenska Cri du Chat Sallskapet adlersborg11@gmail.com
The Netherlands Cri du Chat België/Nederland debbievanbroech@hotmail.com
Trinidad & Tobago Hayden & Rosanne Nanton nantonha@yahoo.com www.fivepminus.org
Turkey Özge Bilir Yildiz ozgebilir@gmail.com http://criduchatturkiye.com
United Kingdom Cri du Chat Syndrome Support Group admin@criduchat.org.uk www.criduchat.org.uk

Parent to Parent Support

Parent to Parent Support Coordinators

Name Phone Email Location
Elizabeth Picciuto (301)625-3249 epicciuto@gmail.com Maryland
Alicia Wilson (318)355-9525 awilson6382@aol.com Arkansas
Olga Kinchla (203)265-1524 olga.kinchla@energizer.com Connecticut
Jacqui Galvani (561)432-2138 jacqui321@comcast.net Florida
Pam Frayn (847)791-6973 pjfrayn@comcast.net Illinois
Rachel Stanford (281)714-7450 rachel.stanford@gmail.com Texas
Jennifer Wong (916)983-4954 akjenwong@yahoo.com California
Jolene Towers (937)427-2709 gnjtowers@aol.com Ohio
Danielle Karcz (603)674-6117 daneswim@comcast.net New Hampshire
Joan Steele (618)687-3006 jsteele@accessus.net Illinois
Ruthie Liberman (781)861-3962 liberwatt@verizon.net Massachusetts
Dawn Sadler (907)474-0956 sadler28@gmail.com Alaska
Shari Campbell (251)776-6430 djcshc@mchsi.com Alabama
Shanida Mathieu (985)652-1661 nidajmath@yahoo.com Louisiana
Christy Hammond (519)425-4404 hammondeggs404@gmail.com Toronto, Ontario, Canada

Lista de Contactos en Espanol

Nombre Telefono Correo Cd./Estado/Pais
Mari Ramirez (254)498-5610 solr_10@yahoo.com Abbott, TX
Natalia Rodriguez (520)979-7895 rodriguez.natalia@yahoo.com Tucson, AZ
Barbara Mena (917)822-5341 menabarbara@yahoo.com Raeford, NC
Elsa Perez (909)630-1205 elsahperez@yahoo.com Pomona, CA
Adela Castro adelacastro@gmail.com Colombia
Patricia Gonzalez-Domingo patricia@solisgonzalez.com Panama
Hayden y Rosanne Nanton (832)449-5252 nantonha@yahoo.com Trinidad y Tobago

Sibling Connection

This is where we connect siblings of persons with the 5P- Syndrome with other siblings for mutual support, sharing of experiences, and creating new friendships.

Click on one of the social media links below to connect.

https://www.facebook.com/groups/388729267945087/

Twitter: @sibs4criduchat

The Sibling Support Project

The Sibling Support Project is the first national program dedicated to the life-long and ever-changing concerns of millions of brothers and sisters of people with special health, developmental, and mental health concerns.

https://www.siblingsupport.org/

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Here’s a poem written by one of our wonderful siblings!!

A Teacher in Disguise

I was not planned, but a blessing in disguise
I was a teacher before I knew I wanted to teach
I was a motivator to my brother, though I did not know I was
I motivated him to crawl and walk, yet I was still learning

He encourages me to be thankful I can walk
He inspires me to be thankful I can talk
He reminds me to be thankful I can drive a car
He motivates me to be thankful I can get a college degree
He inspires me to be thankful I’m able to get married

Because of him, I have friends from all over the states
Because of him, I appreciate the miracle of life
Because of him, we have an awareness walk
Because of him, I stepped out of my comfort zone
Because of him, we fundraise for awareness
Because of him, we raise awareness for 5p- syndrome

He was first a learner, who I taught
He is now a teacher, who I learn from
That walking and talking are gifts that need to be appreciated
That the miracle of life really is a miracle
That it’s really cool having a sibling with 5p- Syndrome
Because I knew a little bit about genetics before my friends did

© Jannie Boulanger

Grandparent Support Group

We are a support group for grandparents of a child with Cri-du-chat Syndrome.

https://www.facebook.com/groups/522940914436945/

We meet as a group during the annual conference to share what has been going on in our grandchild’s life. Some of us live in the same city and are involved in the caretaking of our grandchild; some of us live miles away and are unable to be involved daily. We are a support person for our children and grandchildren with Cri-du-chat Syndrome. We as grandparents help with fundraising for the Society. Many of the grandparents are either semi-retired or retired and have varied business expertise to offer.

Host A Grandparent’s Angel Fund Event!

Pick an occasion that is special to you. It could be your birthday, Mother’s day, Father’s day, Easter, Valentine’s Day, Mardi Gras, St. Patrick’s Day, etc.. In honor of that day, host a potluck dinner, yard sale or car wash. You, your family, friends, and neighbors can donate money at this event to the 5P- Society in the name of your grandchild. Donations are tax deductible!

Contact fellow Grandparents:

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Donna Grasso
708 N. Eagle Rd
Havertown, PA 19083 (Grandson, Matthew Grasso born June 2010)
grassoparis@yahoo.com

Gloria Griffin
603 Wimpleton Place
Louisville, KY
(502) 724-6461 (Grandson, Landen Griffin born July 2003)
flyinggigi@icloud.net

Fran & Jim Bodle
3440 Plumeria Place
Costa Mesa, CA 92646
(714) 540-2399 (Granddaughter, Katie Castillo born November 1987)
jp2592@aol.com