Caregivers/Families
If you are a caregiver for someone with CLS and would like to join CLSF, please email or mail us the following information (you can copy and paste this page into an email or letter, add your comments, and send). There is no membership fee for caregivers. Providing this basic information is a pre-requisite for joining the online forum.
Families who join CLSF will received a set of back issues of the newsletter in hard copy format and contact information for all the other members.
Coffin-Lowry Syndrome Foundation
Attn: Mary C. Hoffman
675 Kalmia Pl NW
Issaquah, WA 98027
Family contact first and last name(s):
Address:
City/State/Zip:
Country:
Home Phone:
Email Address:
Language(s) spoken:
Are you willing to be a translator for any other languages?
(If there is more than one individual with CLS, repeat the following section as needed)
Child's first and last name:
Child's birthdate:
Are there other members of immediate or extended family with CLS? Y/N
The following characteristics and health issues have been reported in people with CLS. Check all that apply. Provide age of onset, if known.
 | early loss of primary teeth |
| seizures |
| hearing problems; sensorineural deafness |
| behavior problems |
| reflux, gastrointestinal problems |
| sleep apnea usually obstructive sleep apnea, caused by small jaw, large tongue, enlarged tonsils, etc., characterized by snoring, daytime sleepiness. |
| "stimulus-induced drop episodes" - affects 10-20% of patients |
| severe intellectual disability in males, severe to moderate in females |
| higher than normal levels of general anxiety |
| over- or undersensitivity to pain, no fear of danger |
| congenital spinal stenosis |
| delayed bone development (for example, the fontenelle, or "soft spot" on the baby's head may not close until age 2) |
| brittle bones |
| pigeon chest or tunnel chest (pectus carinatum or pectus excavatum) - pectus deformity affects 80% of individuals. |
| excessive backward and/or side-to-side curvature of the spine (kyphosis and/or scoliosis) (80% of individuals are affected). |
| abnormalities of the mitral, tricuspid, and aortic valves - mitral valve stenosis, cardiomyopathy, congestive heart failure |
Any other health concerns not listed above:
Has genetic testing been done? Y/N Does your child have the RSK-2 defect? Y/N
In your own words, tell us about your child. How well does he or she manage personal grooming and other living skills, how well does he/she communicate, what are your child's likes and dislikes; personality.
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.)
Optional: Would you like your name and address to be posted on the Parent Contacts page of the CLSF web site as a CLS family contact? Y/N
Send your responses to:
Coffin-Lowry Syndrome Foundation
Attn: Mary C. Hoffman
675 Kalmia Pl NW
Issaquah, WA 98027
The online discussion forum is restricted to families, caregivers, teachers and medical professionals who have direct connections with CLS individuals.
"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 [in the online support forum] 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
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
|
BAHASA, MALAYSIA, HOKKIEN, CANTONESE, TAMIL
Phebe Kanaratnam-Roberts |
FRENCH
|
If you are willing to provide this service for a language not covered above, please contact CLSF.