Philanthropy Friday: Down Syndrome Society

Down syndrome personally touches Lito Ramirez everyday. He is a parent of a two-year-old son living with the medical condition. Down syndrome also drives Lito. Having more than 15-years of senior level experience in strategic communications, brand development, fundraising, health care experience, physicians relations, public policy and government relations it would seem as if all this experience led him up to this moment.

This past March, Lito founded the Central Ohio Down Syndrome Society to forward critical issue areas that have not been a focus of traditional support groups in our community for the last 25 years. While there are good resources for infants and toddlers with Down syndrome and their families, Lito believes there has to be a greater strategic focus on enabling children with Down syndrome so they can lead meaningful and more independent lives as adults. That is why CODSS aggressively advances the cause of research, legislation, and education.

Empowering Individuals and Families Living With Down syndrome

Providing life skills that enable individuals and families living with Down syndrome to lead meaningful, independent and healthy lives is the core of the Central Ohio Down Syndrome Society. In order to reach the core and achieve their goals a comprehensive strategy has been devised.

As part of their research mission, a statewide scientific advisory panel of geneticists, researchers, clinicians, and other physician scientists from Nationwide Children’s Hospital, The Ohio State University Medical Center, and other research institutions has been convened to review and recommend promising Down syndrome research initiatives for funding consideration. They were recently credited by a national Down syndrome organization for being the only group in the nation to ever convene its own science panel.

A legislative lobbyist, who has a younger brother with Down syndrome, has been retained to directly lobby the Ohio General Assembly and state executive government on behalf of CODSS. With legislative representation, they will aggressively forward a proactive legislative agenda that protects and advances the rights of Down syndrome families. Gaining recognition, they were also credited by a national Down organization for being the only group ever to retain its own legislative representation.

Their mission in education centers around helping parents become more thorough, knowledgeable, and complete advocates for their children as they work with school districts and others to develop their child’s educational opportunities. This includes fully educating them on their rights as special needs parents under state and federal law, and what is available to them as they negotiate their child’s Individual Education Plan.

In addition to their scientific advisory panel, legislative lobbying, and parent education efforts, they provide health education programs. Individuals with Down syndrome are vulnerable to a variety of illnesses, including obesity, diabetes, heart disease, depression, childhood leukemia, hearing loss and Alzheimer’s disease. So that families can gain confidence in their ability to mange these conditions and maintain control of their lives, CODSS provides programs that help educate parents on current health care guidelines, health maintenance needs, the use of medications, nutrition, and the evaluation of new treatments.

They also offer numerous social and networking opportunities throughout the year where families can renew friendships, lend support, share experiences, exchange ideas or meet new contacts.

Work for the Future

In just a short five months, Central Ohio Down Syndrome Society has made astonishing gains on both the program and membership levels. Membership has been driven entirely by word-of-mouth among families. It has been very gratifying for Lito to see a deep under layer of parents, donors, professionals, and health care providers who believe that there is something more, something better ahead for children living with Down syndrome.

If you would like to support CODSS through membership, volunteering or to make a donation contact Lito at 866.568.8949.

Many future services are being planned and include: IEP Advocacy program, guest speaker series, special needs financial planning, free physical therapy sessions, occupational and speech therapy, as well as health and wellness checks.

They are working hard for the future and their future looks bright!

This fall, The Central Ohio Down Syndrome Society will go live with their website at www.codss.org and will launch a social media campaign.

To see behind the scenes photos of the interactive and social media planning session with Elevate Thinking and Dynamit visit http://www.inkindconnection.com.

Philanthropy Friday is a feature article by Michele Savoldi that will highlight a Columbus area non-profit organization every other week.