CLSF Contact Information |
Membership |
Online Support Forum |
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Coffin-Lowry Syndrome Foundation Attn: Mary C. Hoffman 675 Kalmia Pl NW Issaquah, WA 98027
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If you are a caregiver for
someone with CLS and would like to join CLSF, please register by filling out
the short application form, below, and sending it to CLSF via email or to
our postal address. Providing this basic information is a
pre-requisite for joining the online forum. Membership allows you to contact other member families in your area or around the globe, and provides opportunities to participate in ongoing research studies. There is no membership fee for caregivers. |
The online discussion forum is restricted to families, caregivers, teachers and medical professionals who have direct connections with CLS individuals. |
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"Thank you for having this website, I have referred to it many times over the last 7-8 years and regret that I haven't registered before now." - Dianna Garvin, Bargersville, IN "I am so grateful for this foundation. I really don’t know what I would do without it." Sharyn McGrath, Victoria, Australia "Reading the messages brought back memories of how desperate I felt when Shane was diagnosed and was very thankful for the existence of this foundation where I found much support, help and comfort." - Phebe Kanaratnam-Roberts |
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| Family contact first and last name(s) | |
| Address | |
| City/State/Zip | |
| Country | |
| Home Phone | |
| Email Address | |
| Language(s) | |
| Child's first and last name | |
| Child's birthdate | |
| Has genetic testing been done? Y/N | |
| Does your child have the RSK-2 defect? Y/N | |
| Do you give permission for your name and address to be shared with other families affected by CLS?* Y/N |
*CLSF does not share your contact information with anyone outside of the membership without your express permission.
The following parent contacts have volunteered to translate your email to CLSF from your native language to English, forward the email to CLSF, then translate the reply back to you. The following languages are available:
SPANISHElizabeth Blanco |
JAPANESEHiroatu Hirayama |
SPANISH, GERMAN, KOREAN, HEBREW, PHILIPINOBob & Maddi Klein |
SERBIAN
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BAHASA, MALAYSIA, HOKKIEN, CANTONESE, TAMIL
Phebe Kanaratnam-Roberts |
FRENCH
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