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Spring 2019

Winter 98 Table of Contents
Versión Español de este artículo (Spanish Version)

Editor's Note: I have collected a number of requests and resources for support. I hope that you will take time to peruse these and consider contacting some of these support resources.

STATEWIDE FAMILY SUPPORT NETWORK FOR SPANISH-SPEAKING FAMILIES

The Outreach Department continues to reach out to our Spanish speaking families by updating our network list of families. Several names have been added over the past few months (even someone from Argentina!) so an updated address/telephone list will be mailed to all the families in our network. Resource information, also, will be included in this mailout. Parent to parent contact has proven to be a supportive and effective way to train parents to become advocates for their children. If you know of a Spanish speaking parent with a visually impaired child, please encourage them to call Jean Robinson at (512) 206-9418 or (800) 872-5273 to register their family on the network.

DBMAT (Deafblind Multihandicapped Association of Texas)

We would like to reach out to families of both children with deafblindness and children with visual impairments with additional disabilities. We will be hosting a special gathering at the February Deafblind Symposium in Austin. Please come and join us for this special evening and meet Ralph Warner, President of the National Family Association of Deaf-Blind (NFADB). If you can't make it, give us a call to get information and support at (972) 281-1904.

Sibling On-line Support Chat

We have a new, fresh look to our Sibling On-line Support Chat, and I am inviting everyone to come check us out! We plan to have guest speakers join us for future on-line sibchats, and I would love to hear any suggestions you might have for who I could connect with. Go to this site <http://www.gate.net/~ucp/sibchat.htm> and follow the "yellow brick road." If you have questions drop me a line at <> or this address <>. From Marianne Tucker, Sibshop Coordinator for Tampa Bay.

Hydroxyglutaric aciduria

Our baby-girl has been diagnosed with this disease. She is now 5 months old, has some brain inaccuracies, dilated cardiomyopathy, and now and then has seizures. According to our physician, there are only 8 patients with this disease, but according to my internet sources there are many more children affected by this illness (at least 28). I am starting a homepage for this disease, which will be released soon to try and get in touch with as many families as possible. If parents wish to exchange information, they can let me know. From Micky Geerts, mom to Sabina at email <>.

Deafblind Teen Wants to Chat

I'm a junior in high school and I would like to connect with other deafblind teens. I'm getting ready to go to college in a year or two and would love to talk with others making similar decisions about college. If you would like to chat, too, send an email to <> and it will be forwarded to me.

Sibs want Penpals

My 4 other children feel left out. I would love parents of deafblind children to have their other kids snail mail to my kids. It will help with grammar, penmanship, friendships, stamp collecting and maybe some mutual feelings. John is 12 years old, James is 10, Maureen is 8, and Brian is 6. Send mail to 25 Woodard Road, Monroe, NY 10950. Dawn and John Slaka at <>