WNY SUPPORT GROUP DIRECTORY 2013 Parent Network of WNY 1000 Main Street Buffalo, New York 14202 (716) 332-4175 www.parentnetworkwny.org
WNY support Group Directory 2013 The Support Group Directory is a resource for individuals with disabilities and their families, as well as service providers. This directory contains a wide variety of groups offering a range of supports. It can point you in the right direction, but it can t answer all your questions. For the groups that interest you, please call the phone number listed. It is not a directory of self-help groups. Check websites to learn how a specific group could support the needs of a family or individual. We encourage you to speak with the group s contact person to ensure that you are comfortable with the group s format and topics. Every effort has been made to make sure that the information in this directory is current and accurate. Support group information changes frequently, however, and users should always verify meeting dates and times. This directory is updated two times a year. If you would like to add, update or remove information for any group, please use the form in the back of this directory and mail to: Parent Network of WNY 1000 Main St. Buffalo, NY 14202 For the electronic version of this change form, please go to: www.partentnetworkwny.org/resources To order more copies of the directory, please call (716) 332-4175. For a downloadable version of the directory visit www.parentnetworkwny.org/resources 1
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Table of contents Adoptive/Foster Care...5 Behavior...6 Bereavement...7 Caregiver...7 Disability Specific Autism...12 Cerebral Palsy...13 Deaf/Hard of Hearing...13 Down Syndrome...14 Fetal Alcohol Syndrome Disorder...14 Food Allergies...14 Fragile X Syndrome...15 Prader Willi...15 Rett Syndrome...15 Spinal Cord Injury...15 Spinal Muscular Atrophy...16 Mental Health...17 Military...18 Neurological Impairment Brain Injury...18 Tourette Syndrome...18 Siblings...19 Special Education...19 Directory Change of Information Form...23 Useful Websites...24 3
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Adoption/Foster Care Adoptive Parents & Kids Support Groups leah Rush North Buffalo Community Center (716) 834-9413 ext. 211 151 Lawn Avenue Buffalo, NY 14207, Erie Adoptive parents come together & share common stories while supporting one another; while their adoptive children meet with other adoptive children to help promote their social skills. Meetings: 2nd Wednesday, 5:30 pm-7:30 pm Adoptive Parents Support Group Karen Kelley Hillside Children s Center (716) 848-6419 131 Orchard Park Road West Seneca, NY 14224, Erie www.hillside.com Meet others who share the daily challenges & rewards of parenting adopted children & teens. Pre & post-adoptive parents welcome. Meetings: Last Tuesday, 6:30 pm-8:30 pm Erie County Foster & Adoptive Parents Advisory Board, Inc. (716) 858-1630 478 Main Street, Room 501 ecfapab@gmail.com Buffalo, NY 14202, Erie www.ecfapab.weebly.com Membership is open to all Erie County foster/adoptive parents to discuss issues & concerns & to improve communication. Child care provided with one week notice. Adoption Resource Center Support Group Karen Kelley Hillside Children s Center (716) 848-6419 70 Jewett Parkway kkelley@hillside.com Buffalo, NY 14214, Erie www.hillside.com Meetings: 2nd Wednesday, 11:00 am Adoption Support and Preservation (ASAP) Group Jeff Ribbeck 66 Stevens Street (716) 439-5436 Lockport, NY 14064, Niagara Meetings: 3rd Wednesday, 6:00 pm-8:00 pm 5
Behavior Child & Family Support (716) 886-1242 ext. 318 Church of Latter Day Saints 999 Delaware Avenue Buffalo, NY 14209, Erie www.eriemha.org offers support for families raising a child with emotional, behavioral or mental health challenges. Youth support group meets at the same time in a separate room. Meetings: First Friday, 6:00 pm-7:30 pm Family Support Group Carolyn Vujnovic WNYCPC Community Services Buffalo Outpatient Center (716) 677-7079 575 Alberta Drive, Suite 2 Amherst, NY 14226, Erie www.eriemha.org For families who have children with emotional or behavioral problems. Meetings: 2nd & 4th Thursday, 7:00 pm-9:00 pm GLOW Family Support Program Hillside Children s Center, 29 Liberty Street Suite 208 Batavia, NY 14020 or 24 Main Street (585) 256-7500 Mt. Morris, NY 14150 info@hillside.com 96 West Buffalo Street Warsaw, NY 14569, Genesee; Livingston; Wyoming; Orleans www.hillside.com GLOW offers support, respite, advocacy, information & referral, newsletters, a library, etc. For families of children birth to age 21 with an emotional and/or behavioral challenge. Meetings: 24 hours a day Town of Tonawanda Concerned Parents Group (716) 879-6650 Town of Tonawanda Police Department 1835 Sheridan Drive Tonawanda, NY 14223, Erie A group for parents of children with behavioral or family issues. You don t have to be a resident of the town to participate. Meetings: 7:00 pm Thursday 6
Bereavement Caring Arms, Stillbirth and Newborn Loss to One Year (716) 568-3777 St. Gregory Ministerial Building (716) 568-6653 1540 Maple Road Williamsville, NY 14221, Erie For parents, grandparents and other family members. Meetings: 2nd Tuesday, 7:00 pm-9:00 pm Coping with the Loss of a Child Donna Possenti Jewish Family Services (716) 883-1914 ext. 311 2640 North Forest Road Getzville, NY 14068, Erie www.jfsbuffalo.org Life Transitiona Center amy Adler 150 Bennett Road (716) 836-6460 Cheektowaga, NY 14227, Erie hosts many support groups for parents who have lost a child. Western New York Perinatal Bereavement Network, Inc. Christine Scott 30 South Cayuga Road - Lower (716) 626-6363 Williamsville, NY 14221, Erie Christine@wnypbn.org www.wnypbn.org telephone support from a trained parent and links to area support groups for parents who have lost a child due to miscarriage, ectopic pregnancy, still birth, or early infant death. Women and Children s Hospital Williamsville United Methodist Church (716) 878-7773 5681 Main Street, Williamsville, NY 14221, Erie www.wchob.org/bereavement hosts several support groups for adults & children who have lost a loved one. CARegivers Bornhava Men s Forum Ellen Crawford 25 Chateau Terrace, (716) 839-1655 Amherst, NY 14226, Erie, Niagara info@bornhava.org www.bornhava.org For fathers & male caregivers of children with developmental delays. Meetings: 7:30 pm one evening per month during the school year. 7
Bornhava WOW MOMs ann or Pat 25 Chateau Terrace (716) 839-1655 Amherst, NY 14226, Erie www.bornhava.org For women who care for children with special needs Meetings: One Thursday per month, 7:00 pm Cantalician Center for Learning Michael Kinz 1360 Eggert Road (716) 835-0417 Amherst, NY 14226,Erie www.cantaliciancenter.org Support groups of Early Intervention & Preschool families. Meetings: 8:00 am-2:00 pm year round DDAWNY (716) 877-7007 (Developmental Disabilities Alliance of WNY) Family Committee 7 Community Drive Cheektowaga, NY 14225, Erie ddawny@ddawny.org www.ddawny.org or facebook.com/ddawny Family Committee Group meets to educate and inform people about the unmet needs of individuals with developmental disabilities and ensure quality homes and services are available. Meetings: 3rd Tuesday, 7:00 pm-8:30 pm Families Child Advocacy Network Fathers Support Group Debbie 135 Delaware Avenue, Suite 210 (716) 884-2599 Buffalo, NY 14202, Erie www.fcanwny.org For fathers/male caregivers who are raising a child with special behavioral challenges. Meetings: 3rd Wednesday, 6:30 pm-8:30 pm Families Child Advocacy Network Support Groups Vicki McCarthy Family Resource Center (716) 884-2599 135 Delaware Avenue Buffalo, NY 14202, Erie www.fcanwny.org For families raising children with social, emotional, or behavioral needs. Meetings: 2nd Monday, 6:30 pm-8:00 pm or Southtowns Roundtable Support Group Wesleyan Church of Hamburg 2999 McKinley Parkway Hamburg, NY 14075 Meetings: 1st & 3rd Tuesday, 6:00 pm-8:00 pm 8
Family Matters Joanne Lana Ronald McDonald House (716) 878-7272 780 West Ferry Street Buffalo, NY 14222, Erie www.wchob.org An education & support group for parents of a child living with a chronic or serious medical condition. Meetings: 1st Thursday, 5:30 pm-8:00 pm Family Partners for Change angela Dubel WNY DDSO (716) 880-3834 1200 East & West Road dubel@people-inc.org West Seneca, NY 14224 A group of parents with adult children in group homes & agency representatives come together to discuss issues. Grand Island Parent & Provider Support Group Vienna Haak 2139 Grand Island Boulevard (716) 430-5118 Grand Island, NY 14072, Erie vhaak@realtyusa.com www.facebook.com/grandislandnysupportgroup A support group for providers, parents, and caregivers of family and friends with developmental disabilities. This group is not exclusive to Grand Island families! Bring a friend. Meetings: 1st Tuesday, 6:30 p.m. - 8:00 p.m. Kinship Caregivers Program Deborah McIntyre or Pamela Lanich Catholic Charities (716) 856-4494 Erie, Niagara, Cattaraugus www.ccwny.org Support for relative caregivers of children who have been separated from biological parents. Meetings: Call for schedule Niagara County CAFÉ Roxanne Albond-Buchner (Concerned Advocacy and Families Empowered) (716) 297-6400, ext. 332 Opportunities Unlimited of Niagara ralbond@opportunitiesunlimited.org 1555 Fashion Outlet Blvd. Niagara Falls, NY 14304, Niagara http://cafeofniagaracounty.webs.com A gathering of parents, family members, friends, and self-advocates dedicated to the support and education of one another, and advocacy for family members with disabilities. 9
Parent Child Connection Nicole Dayka Family Support Center (716) 646-9593 4540 Southwestern Boulevard Hamburg, NY 14075, Erie www.parentchildconnection.org the purpose of this group is to provide parenting enrichment opportunities by offering educational programs to the families of Hamburg & surrounding communities. Meetings: Check Website Parent to Parent Tanja O Brocta WNY DDSO (716) 517-3448 1200 East & West Road West Seneca, NY 14224, Erie www.parenttoparentnys.org Connecting parents 1-to-1 with other parents of children of like disabilities. Parents-for-Parents Group Tess Kerzner The Resource Center Administration Building (716) 661-1421 200 Dunham Avenue tess.kerzner@resourcecenter.org Jamestown, NY 14701, Chautauqua or Connections North Center 10825 Bennett Road Dunkirk, NY 14048, Chautauqua www.resourcecenter.org A monthly family member/caregiver support group which connects & supports families of individuals with special needs. Meetings: 1st Wednesday of the month (Jamestown); 2nd Wednesday of the month (Dunkirk) 5:30 pm -7:30 pm Pioneer Area Parent Support Group bev McVay (716) 492-2126 sponsored by Parent to Parent, this group is for parents of children with any disability. SMILE Support Groups in Niagara County lydia Szafranski Wheatfield Community Senior Center (716) 433-4487 2790 Church Road North Tonawanda, NY 14120, Niagara www.ndyfs.org to provide support, education & information on topics selected by group members & parent facilitators. Meetings: 2nd & 4th Friday of each month, 7:00 pm -8:30 pm 10
Southtowns Allergy Parent Support Group Nicole Dayka Family Support Center Frontier Community Learning Center (716) 646-9593 Hamburg, NY 14075, Erie www.parentchildconnection.org Meetings: Group meets as needed. Call for dates, 6:30 pm Sweet Home Family Support Group (716) 886-1242 ext. 313 Sweet Home Family Support Center 1901 Sweet Home Road Amherst, NY 14228, Erie www.eriemha.org For caregivers that have a child with emotional or behavioral challenges. Meetings: Last Monday, 6:00 pm-7:30 pm 11
disability specific Autism ACCEPT Parent Facilitated Group Rachel Saeger Brighton Community Church (716) 836-4378 1225 Brighton Road acceptfamilies@gmail.com Tonawanda NY 14150, Erie Group of parents of children on the Autism Spectrum which provides support, education & resources to families. Meetings: 3rd Thursday, 6:30 pm-8:00 pm ASA WNY Daytime Chapter Support Coffees Kathy or Karen & Occasional Evening Information Meetings (716) 633-2275 Southtowns & Northtowns Locations info@autismwny.org Erie www.autismwny.org Meetings: 10:00 am-12:00 pm Call for meetin location Autism Spectrum Disorder & Related Disabilities Parent Group Chris Hoff Southtowns Support Group (716) 648-7356 Erie hoffhoff15@aol.com www.parentchildconnection.org A support group in Hamburg for parents of children with Asperger s, PDD-NOS, high functioning Autism & NLD Meetings: Last Friday, 7:00 pm-9:00 pm Autism Support Group Vienna Haak 2139 Grand Island Boulevard (716) 430-5118 Grand Island, NY 14072, Erie, Niagara vhaak@yahoo.com www.facebook.com/grandislandnysupportgroup Open to all families affected by Autism. Meetings: 1st Tuesday, 6:30 pm Autism Support Group for Parents of Children with ASD Jana Mertz EPIC/Parent Network of WNY (716) 878-7600 1000 Main Street jmertz@kaleidahealth.org Buffalo, NY 14202, Erie Group provides a welcoming environment for parents & other caregivers to meet, share experiences, ask questions & receive support. Meetings: 2nd Wednesdays, 6:30 pm-8:30 pm 12
Connections Program Parent Support Group Sandy Cherre for Families of Children with HF ASD (716) 629-3400 ext. 3422 Summit Ed Resources 150 Stahl Road Getzville, NY 14068, Erie, Niagara Share ideas, information, treatment options & advocacy strategies. Meetings: 1st Monday, 7:00 pm-8:30 pm Iroquois Area Parent Support Group Tammy Olejniczak Iroquois High school (716) 652-0277 2111 Girdle Road creative14215@yahoo.com Elma, NY 14059, Erie Open to all parents of special needs children, do not have to be in district. Currently most families have children with ASD. Meetings: During the school year, Daytime Olean Area Parent Networking Karen O Dell ReHabilitation Center (716) 307-9905 410 West Sullivan Street Olean, NY 14760, Cattaraugus www.autismwny.org A network for parents who have agreed to be a resource for other parents of children on the spectrum andwill work one-on-one with families. Meetings: No regular meetings Cerebral Palsy Connected Parents Support Group Stephanie Collier Corner Bakery Café (meeting room) connectedparentswny@gmail.com 1551 Niagara Falls Blvd. or facebook.com/connectedparents Amherst, NY 14226, Erie A group for the parents or caregivers of children with cerebral palsy who want to connect with other parents; email Stephanie if you would like to attend or to learn about meetings Deaf/Hard of Hearing St. Mary s School for the Deaf (716) 834-7200 2253 Main Street info@smsdk12.org Buffalo, NY 14214, Erie www.smsdk12.org Parent support group for families who have children who are deaf or hard of hearing. Meetings: Call for schedule 13
Down Syndrome Down Syndrome Parent Group (716) 874-4753 547 Englewood Avenue (716) 832-9334 Buffalo, NY 14223, Erie www.dspgwny@hotmail.com www.dspgwny.org For families of children with Down Syndrome; provides individual support services as needed. Fetal Alcohol syndrome disorder WNY Fetal Alcohol Spectrum Disorders Helen Weinstein Family Support Group (716) 831-2298 ext. 103 Erie County Council on the Prevention of helenw@eccpasa.org Alcohol & Substance Abuse (ECPASA), 1625 Hertel Avenue Buffalo, NY 14216, Erie www.eccpasa.org Meet with other families, share experiences, ideas and information. Meetings: 3rd Wednesday, 9:30 a.m. - 11:00 a.m. and 7:00 pm-9:00 pm Food Allergies Greater Buffalo Food Allergy Alliance Kim Pasierb Cleveland Hill Fire Hall (716) 681-6506 440 Cleveland Drive Cheektowaga, NY 14215, Erie www.gbfoodallergy.org To share information and give support to people who live with food allergies. Meetings: 3rd Monday, 7:00 pm-9:00 pm Spoonful of Love Support Group (716) 631-7503 350 Greenhaven Terrace Tonawanda, NY 14150 tmarioles@hscwny.com this adults-only forum is a free parent-run support group designed for parents/caregivers of children with special feeding concerns. Meetings: Every month on the 3rd Thursday from 7-9pm. 14
Fragile x Syndrome Fragile X Resource Group of WNY Janet Fisher 8373 Black Walnut Drive (716) 741-7192 East Amherst, NY 14051, Erie Janfish5@gmail.com Meetings: 7:00 pm Prader Willi Syndrome Support Group Prader Willi Syndrome Support Group Jeannie Dickinson (716) 773-3076 Prader-Willi Syndrome (PWS) Support Group Brian and Lori Burgin Eastern Hills Wesleyan Church (716) 435-0491 8445 Greiner Rd. (716) 774-8387 Williamsville, NY 14221 (716) 316-2094 Meetings: Group meets at various times during the year in the Williamsville area. Rett Syndrome Rett Syndrome Support Group Jan Myles (716) 689-0953 Connects families who have a newly diagnosed family member to other families; also will share information about the disorder with other groups. Spinal cord injury Spinal Cord Injury Support Group Daryl & Jack Trenchard ECMC Outpatient Rehabilitation Clinic (716) 898-3227 462 Grider Buffalo, NY 14215, Erie www.ecmc.edu rehabilitation for spinal injuries. Meetings: 3rd Thursday, 3:00 pm-4:00 pm 15
Spinal Muscular Atrophy WNY Chapter of Families of bonnie Shiesley Spinal Muscular Atrophy (SMA) (716) 622-0804 P.O. Box 444 bonnie@wnyfsma.org North Tonawanda, NY 14120, Niagara www.wnyfsma.org or www.facebook.com/wnyfsma to help cope with SMA through information & support. Meetings: 1st or 2nd Tuesday 16
Mental Health Coping Through Christ Anxiety & (716) 833-0298 Depression All are Welcome St. Joseph University Parish St. Joseph Parish Center Library 3269 Main Street Buffalo, NY 14214, Erie For those with a mental health diagnosis, their families, caregiviers, supporters & friends. Meetings: Every Tuesday, 7:00 pm-8:30 pm National Alliance for the Mentally Ill (NAMI) Gerrie Cruz St. Paul s Lutheran Church (716) 877-2076 4007 Main Street namibuffalo@aol.com Amherst, NY 14226, Erie www.namibuffalony.org Mutual support for families of the mentally ill. Meetings: 3rd Wednesday, 7:00 pm NAMI Education Support Group Marcy Rose St. Paul s Lutheran Church (716) 688-4125 4007 Main Street Amherst, NY 14226, Erie Provides education (speakers) for families dealing with mental health issues. Meetings: 2nd Thursday 17
military Operation C.O.M. Mary McParlane 999 Delaware Avenue (716) 886-1242 ext. 313 Buffalo, NY 14209, Erie www.eriemha.org A free interactive program to support children of the military & to establish positive coping skills to deal with the stress of deployment, to express feelings & strengthen self-confidence. Meetings: Every Friday neurological impairment brain injury Headway of Western New York, Inc. (716) 408-3100 2635 Delaware Avenue, Suite E Buffalo, NY 14216, Erie www.headwayofwny.org several support groups are available for survivors of brain injury & their families. Meetings: 1st & 3rd Tuesday (peer) 6:30 pm-8:00 pm (peer support and caregivers) 1st Tuesday (caregivers) 6:30 pm-8:00 pm (caregivers support) tourette syndrome WNY Chapter Tourette Syndrome Association Sue Conners Greater New York State Chapter (716) 839-4430 20 Thomas Jefferson Lane conners@roadrunner.com Snyder, NY 14226, Erie www.tsa-gnys.org Adult rap group & children s rap group; support for families Meetings: 1st Wednesday, 7:00 pm 18
sibliings Opportunities Unlimited of Niagara County Roxanne www.opportunitiesunlimited.org (716) 297-6400 Group open to siblings and family members who have a family member with developmental disabilities Sibshops at Canisius College Dr. Susan Putnam Canisius College (716) 888-2895 2001 Main Street putnams@canisius.edu Buffalo, NY 14208, Erie www.canisius.edu/sibshop these support groups are designed to meet the needs of brothers & sisters of children diagnosed with a serious developmental disorder. Meetings: Saturdays, 1:00 pm-5:00 pm Williamsville SEPTSA Sibling Support Workshops Judy Kemp 17 Chaumont Dr. Workshop Coordinator Williamsville, NY 14221 williamsvilleseptsa@gmail.com this group is for teens, ages 14-18, with brothers and sisters who have developmental disabilities. Special Education Clarence SEPTSA Karen Conway www.clarenceschools.org (716) 741-3691 or (716) 812-0523 Lou Ann Nowicki (716) 741-7065 Snowicki66@verizon.net Frontier SEPTA Donna Gonser www.frontier.wnyric.org (716) 627-9068 Ann Marie Pezone (716) 627-7354 Hamburg Chris Hoff Special Ed Committee of PTA (716) 648-7356 Hoffhofft15@aol.com KenTon SEPTSA Janet Vaughan www.kentonseptsa.com (716) 310-4580 kentonseptsa@gmail.com 19
Sweet Home Family Support Center anne Nowak, Coordinator Common Sense Parenting (716) 250-1229 anowak@shs.k12.ny.us Special Education Parents Advisory Committee Rosemary Arnone School #12 Central CSE (716) 816-4747 33 Ash Street Rarnone@buffaloschools.org Buffalo, NY 14204, Erie www.buffaloschools.org All meetings are open to parents of children receiving special education services in the Buffalo Public School District. Starpoint Special Education Group (SSEG) Sara Siracuse, Brian Farrell 4363 Mapleton Road Driveway C or April Breen Middle School (716) 625-8922 Lockport, NY 14094, Niagara or (716) 210-2321 aprilbreen@yahoo.com A group for parents of chidlren in Special Education. Meetings: 2nd Tuesday, 7:00 pm-9:00 pm October-June Williamsville SEPTSA Dave Whalen, President www.williamsvilleseptsa.org (716) 565-9338 davidvwhalen@yahoo.com Judy Kemp (716) 912-9104 jandjkemp@roadrunner.com 20
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Additional Support Parent Network specializes in empowering families to learn about services, communicate effectively with professionals, and to successfully advocate for their children. Parent Network also works with professionals by providing continuing education opportunities, resources and referral servies. The ECDC provides free information, referral, technical assistance and support to families, professionals, and community agencies concerned with children birth to five with suspected or diagnosed delays or disabilities. They provide ongoing community training programs for both parents and professionals. Visit their website for more information www.wchob.org/ecdc 22
WNY support Group Directory Change form The form below is used to update information about any changes to support groups. Please complete the information requested below for all changes. Please circle one option for the information provided on this form: Add Update Remove Name of Group: Description: Contact Person: Address: Support Group Phone Number: E-mail and Website: Meeting Times: Meeting Day of Each Month: Category: Please send to plk@parentnetworkwny.org or mail to: Parent Network of WNY 1000 Main Street Buffalo, NY 14202 Attn: Peg 23
USEful websites www.parentnetworkwny.org www.wchob.org/ecod www.erie.gov/ecod www.ddawny.org www.ddinfolink.org Parent Network of Western New York Early Childhood Direction Center Erie County Office for the Disabled The Developemental Disabilities Alliance of Western New York Central Referral Services website _ for locating services for people with developmental disabilities 24