International Rett Syndrome Foundation (IRSF) - Regional Representative

Regional Representative - California (Southern)

Untitled Document Contact Information

State	Name	Email	Phone
California (Southern)	Sherri Brady	This e-mail address is being protected from spam bots, you need JavaScript enabled to view it	562-479-0097
Biography
My daughter Lauren and I live in Whittier, CA. Lauren is 13 and was officially diagnosed with Rett at the age of 3. She is unable to walk independently but does occasionally stand for several minutes and can take a few steps unassisted. Lauren has many of the challenges of Rett but I hate the seizures the most. In spite of Rett Lauren is a very happy young lady and we have lots of fun together. She’s got a great personality and is extremely smart. Thanks to the use of various Augmentative Communication tools and techniques she’s been able to show everyone just how smart she is. I think I’ve been a Regional Rep for a little over 6 years; I enjoy it so much I’ve lost track. As Rep I try my best to help and support the families the best I can. I’m extremely lucky to have several active families that help with planning events and gatherings. We get together several times each year for support group meetings, potlucks, pool parties and luncheons. Our big events are the Annual SoCal Family Picnic & Fundraiser and we just had our 1st Annual Strollathon. If I can be of any help please feel free to contact me anytime, I don’t have all the answers but if I don’t I’ll do my best to help you find someone that does. If you have any suggestions or ideas for activities for our group or you’re interested in planning an event or a fundraiser please let me know.

Events

Fundraisers		Family Gatherings
Rett Night at the Padres June 19th Tailgate starts at 4pm. Game starts at 5:30pm Tickets available now for $20 ($25 after June 11th) which includes the tailgater and game Contact Jim - This e-mail address is being protected from spam bots, you need JavaScript enabled to view it 8th Annual Family Picnic & Fundraiser October 2010 (date TBD) 2nd Annual SoCal Strollathon 2011		OC Luncheons Support Group Meeting & Potluck Summer Get Together Holiday Potluck & Party 2010 upcoming dates TBD
Support Groups		Miscellaneous Events

State Specific Information and Services

Information and Links to State Resources
CA Department of Developmental Services- ww.dds.ca.gov/ Regional Centers- www.dds.ca.gov/rc/RCLookup.cfm Medi-Cal Waiver- www.dds.cahwnet.gov/waiver/ California Children’s Services (CCS)- www.dhs.ca.gov/pcfh/cms/ccs/ Family Resource Centers- www.frcnca.org/about.html State Council on Developmental Disabilities- www.scdd.ca.gov/ Area Boards- www.scdd.ca.gov/Area_Boards.htm ATEC (Assisitve Technology Exchange Center)- www.ocgoodwill.org/assistive_technology.aspx SSI- www.ssa.gov/pubs/11125.html In Home Supportive Services (IHSS)- www.dss.cahwnet.gov/cdssweb/PG139.htm Additional IHSS info- www.pai-ca.org/pubs/501301.htm, www.pai-ca.org/pubs/527601.htm In LA County to apply call 800-944-4477 and the Ombudsman number is 888-678-4477 Disability Rights California (formerly Protection & Advocacy)- www.pai-ca.org/ IDEA- idea.ed.gov Lanterman Act- www.dds.ca.gov/Statutes/Statutes_Home.cfm CA Department of Education- www.cde.ca.gov/index.asp CDE/Special Education- www.cde.ca.gov/sp/se/ CA Disability Community Action Network- www.cdcan.us Disability Resources CA- www.disabilityresources.org/CALIFORNIA.html

Recommended Professionals

Doctors		Therapists
CHLA Rett Clinic 3250 Wilshire Blvd. Los Angeles, CA 90010 2nd & 4th Wednesday of each month For an appointment contact Noreen Clarke Sheehan, RN, MSN 323.361.3849 This e-mail address is being protected from spam bots, you need JavaScript enabled to view it
Schools		Miscellaneous

The professionals listed above have been added by individual Rett families. IRSF has not performed any background research on these individuals and in no way endorses any opinion on the professional expertise or experience of the listed individuals. The inclusion of any professional on this list does not indicate a recommendation or referral by IRSF or its staff.

Helpful Hints and Personal Messages

Unique Ideas and Suggestions		Messages from Individual Regional Reps
Southern California Edison Medical Baseline discount- www.sce.com/residential/rates/medical-baseline-allocation.htm SoCal Gas Assistance Program- www.socalgas.com/residential/assistance DMV Disabled Placard- www.dmv.ca.gov/pubs/brochures/fast_facts/ffvr07.htm Attend support group meetings of other groups, Autism, CP, Epilepsy, etc. Even though the diagnosis is different we all deal with similar issues. You don't have to take "No" for and answer if you don't want to. There is usually an appeal process for most services. In some cases issues can be resolved in mediation without going through the full process. If you are interested in attending conferences be sure to add that to your chil'’s Regional Center IPP. Notify the RC of the conference you want to attend 30 days or more in advance so that IRSF (or any other organization) can be vendored if they aren't already.		Contact me if you'd like to be added to my email list for updates on local events or Join our Facebook page "SoCal Rett Updates"- www.facebook.com/#!/pages/SoCal-Rett-Updates/123002967709932?ref=ts