Siblings Who Have Made a Difference
One of the real joys directing the Sibling Support Project is meeting the many giving brothers and sisters who are making a difference in the lives of others. Invariably, these sibs make a significant contribution to the lives of their brothers and sisters who have special needs. Almost as often, they make contributions to others as well.
This page seeks to celebrate brothers and sisters—famous and not-so-famous, and young and not-so-young—who have somehow made a difference. As a group, sibs are modest and not the kind to toot their own horn. This, I think, is all the more reason to call attention to their efforts and big hearts.
Check back frequently, as this list is sure to grow. If you know a brother or sister whose efforts in their community should be honored, nominate them by using the nomination guidelines
|Actor John Ritter, known for his work on Broadway, films, and especially television, was the younger son of Western film star and country music great, Tex Ritter, and Dorothy Ritter, who founded United Cerebral Palsy's affiliate in Los Angeles. John's brother Tom has cerebral palsy, leading to John’s close involvement with UCP beginning in the late 1970's. For more than 15 years, John was one of the national hosts for UCP telethons to raise funds and awareness for UCP. He was a part of the UCP family for more than 20 years, and was both an immensely talented entertainer and a compassionate volunteer dedicated to improving the lives of people with disabilities.|
Tara with members of her Sibshop.
She’s the second adult from the left.
|Tara Kosieniak is a faithful older sister to her brother Nick, who has cerebral palsy, muscular dystrophy, and severe intellectual disabilities. For the past 15 years, Tara has worked for the Community Support Services of Brookfield, Illinois, which provides services for people with developmental disabilities. Tara recently introduced Sibshops to her agency. According to her co-workers, Tara is an exceptional service coordinator who goes the extra mile and develops lasting bonds with the families she serves. If these efforts weren’t enough, Tara also is a moderator of SibKids, the Sibling Support Project’s listserv for young brothers and sisters.|
Elena, with her brother Joe
|Elena Villani is the primary caregiver for her brother Joe, who has Down syndrome. Although Elena has a demanding career (what does she do?), she’s an active volunteer at a local hospice agency and she assures that her brother Joe has a rich, full life by taking Joe and his friends out every weekend. According to her sister Alex, Elena not only enriches the lives of her family, friends and colleagues, but also of the families she meets as a hospice volunteer. They depend upon her to help them get through especially difficult times.|
Natalie, right, with her sister Abby
|Natalie Homa, 19, of Burnsville, Minnesota, has always been there for all the joys and challenges in her little sister Abby’s life. An advocate from the start, she attended many appointments and therapies and--even as a young sister--was not shy about asking therapists, doctors, and teachers questions about her sister’s treatment. Over the years, Natalie has helped with Abby’s therapies and care, taken her sister to camp, served as an inclusion facilitator and interpreter, escorted Abby to school dances, attending IEP meetings and helped her sister in dance shows, ice skating lessons, and school choir concerts. Busy with her psychology major at University of St. Thomas, Natalie still finds time to serve as a behavior therapist, personal care attendant and to teach a weekly adaptive dance class to children who have disabilities.|
Mr. and Mrs. Joseph P. Kennedy with their nine children in Bronxville, N.Y., 1938. From left are, seated: Eunice, Jean, Edward (on lap of his father), Patricia, and Kathleen. Standing: Rosemary, Robert, John, Mrs. Kennedy, and Joseph, Jr.
It is no exaggeration to note that special education and other services for people with disabilities in the United States--and indeed the world--would not be the same had it not been for the efforts of five remarkable siblings of Rosemary Kennedy: Eunice, Jack, Bobby, Jean, and Teddy.
Rosemary Kennedy, who was born with an intellectual disability, died at age 86 in January of 2005. At her funeral, her sister Eunice Kennedy Shriver said:
“After Rosemary moved to Wisconsin, Mother and Dad and all of my brothers and sisters wondered how we could support her, but what we didn’t realize is that she would begin a lifetime of supporting us. We talked about Joe Jr.’s Foundation (the Joseph P. Kennedy, Jr. Foundation and agreed to focus it on persons with special needs… Jack (President John F. Kennedy) launched the great federal efforts—NICHD (National Institute of Child Health and Human Development, The President’s Council on Mental Retardation (now The President's Committee for People with Intellectual Disabilities, and The University Affiliated Centers (now University Centers on Disabilities. Bobby (Senator Robert F. Kennedy) worked to close Willowbrook. Teddy (Senator Edward M. Kennedy) has spent 40 years changing the laws of the land. Libraries, schools, clinics, and treatments were created. Very Special Arts was born (by Jean Kennedy Smith). Special Olympics (created by Eunice Kennedy Shriver) came into being. Rosie’s spirit inspired the 3rd generation of Kennedy’s with Best Buddies. We all honored her, supported her, and did what we could.”
Lisa and Michael
|Lisa Helms, 13, of Evansville, Wisconsin was seven when her brother Michael was diagnosed with PDD-NOS (Pervasive Developmental Disorder, Not Otherwise Specified). After some initial worries about not having a typical relationship with her brother, Lisa has become her brother’s biggest advocate. Besides advocating for her brother and other children with special needs in her community, Lisa testified at the Wisconsin state capitol on November 19th, 2004 at a public hearing regarding budget cuts for service for people who have autism. Governor Jim Doyle and other legislators heard Lisa describe how important state-funded supports were to her brother and family.|
|Throughout her brother Danny’s life, Gerri Zinkan has been an incredible advocate. The two are very close, going out for breakfast every Saturday and visiting their brother who works at a local firehouse. Gerri’s support, however, goes beyond family ties. Retired from Indiana Bell Telephone Company in Indianapolis, she is the Parent Chapter President for Noble/The Arc of Greater Indianapolis, connecting families and helping them advocate for loved ones. A tireless volunteer, she coordinated a historical documentation project for Noble’s 50th anniversary, interviewing founding families and recording their stories. Last summer she championed Noble’s cause before a local government council when it moved to eliminate a significant source of Noble’s funding. The grassroots efforts of her and other families were key to restoring that allocation.|
|Kate Carbone was six when her sister Kristin suffered a devastating brain injury. At thirteen, she took time off from school and traveled from Santa Barbara to Sacramento to attend a hearing of the Department of Developmental Services (DDS) subcommittee on the subject of parental co-pay. Kate and her sister Kristin were the only children in the filled auditorium. Kate boldly walked to the microphone and spoke about the co-pay adding insult to injury for overwhelmed families. That night Kate attended a stakeholder strategy meeting, and clearly spelled out objectives for continued lobbying. By 9 pm she emailed the action plan to her list of sibs. While the adults were still planning, Kate had already reached out to over 80 teens!!|
Kim Keprios, executive director of Arc Hennepin-Carver, understands the joys and challenges siblings experience living with a brother or sister with disabilities. Kim’s brother, Mike, was born blind and with mental retardation. Kim is his guardian. She also named her son, Michael John, after him, and credits Mike with bringing her to a career working with people with disabilities.
Kim joined Arc Hennepin County in 1982 as Community Service Director. She was promoted to executive director in 1986 and was again named executive director when the Hennepin and Carver county chapters merged in January 2001 to become Arc Hennepin-Carver. Throughout her Arc career, Kim has advanced many initiatives to improve the lives of people with mental retardation and related developmental disabilities and their families. In 1992, she held an Executive Public Policy internship in the Government Affairs Office of The Arc of the United States and in 1999, The Arc of Minnesota honored her with its Betty Hubbard Family Advocacy award.
She and her husband, John Everett, helped rejuvenate Neurofibromatosis (NF) Minnesota and provide leadership with the support groups, membership meetings, fostering connections with the medical community and fundraising for the organization.
“It’s all because of Mike,” Kim says. “He teaches me about compassion, courage and faith, and to appreciate what I have. And my parents are role models for inclusion – Mike was Mike, and we never left him out. Since my son, Michael John, was diagnosed with NF, I really realize how much my family experience prepared me for accepting what life gives you and seeing the possibilities, rather than the downside of it all.”
Celebrate sibs' contributions by making a contribution to the Sibling Support Project. Your support makes all the difference in the world!
- Please write your nominations in third person;
- please keep your nominations to fewer than 120 words;
- in your nomination, please mention the name of the sibling who has special needs and feel free to comment on the nominee’s relationship with the sibling who has special needs—however, the primary focus of your nomination should be on the nominee’s contributions outside of the family;
- in your nomination, please let us know what the nominee does for a living;
- in your nomination, please let us know where the nominee lives;
- please attach a photo of the nominee (with the sibling with special needs should you wish)to your email nomination in a high-resolution .jpg or .gif format; and
- please let the nominee know that he/she is being nominated prior to sending in the nomination.