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Advocating for Big Causes

Advocating for Big Causes

Colleen Gioffreda helps educate patients and their families about skeletal dysplasia and serves as national adoption coordinator for the Little People of America.

Colleen Gioffreda has achondroplasia, a form of dwarfism that is one of the most common skeletal dysplasias—disorders of cartilage and bone growth. The same disease that has marked her life has inspired her job as senior program coordinator for the Greenberg Center for Skeletal Dysplasias in the McKusick-Nathans Institute of Genetic Medicine at the Johns Hopkins University School of Medicine.

It has also motivated her achievements as the national adoption coordinator for Little People of America (LPA), where she has helped place more than 220 children with skeletal dysplasias since 2004.

Gioffreda was invited to Capitol Hill last June to testify about the discrimination faced by people with disabilities who wish to adopt. Later, she traveled to the White House to participate in a celebration of the 25th anniversary of the passage of the Americans with Disabilities Act. She recently spoke to Dome about the Greenberg Center and her advocacy work.

You first visited the Greenberg Center as a patient when you were a child. Now you help inform families and patients as to what to expect from their condition and its treatment.

What special issues do they face?

Sometimes kids need surgeries or special care, such as screening for sleep apnea and physical accommodations at school. Then, when they get older, the main concerns are social issues, such as bullying. We provide parents with resources and information to overcome these problems. For example, a teenage girl with skeletal dysplasia may need help building self-esteem and accepting her own body.

When I was treated here, I was very lucky to have minimal health issues. It meant a lot to my parents to know they were not alone in this process. The staff here helped them understand that everything was going to be fine with me, and that I could do anything I wanted to do. Now my children see specialists here. The center provides a great community.

How hard is it for people with special needs to adopt children in the United States?

Little People of America found 12 children who remained in the foster care system, even though we had many families who were ready and willing to adopt them. For example, one family tried to adopt a child with dysplasia who also had a breathing tube.

When the social worker found out that the family members were little people, she told me she thought they couldn’t handle a child with a tracheostomy. Many times in the adoption process, we depend on the perspectives of social workers. And if they are not open-minded, it makes the process hard. I try to work with one case at a time, to get each child home to a family.

Is the international adoption process equally difficult for disabled parents with disabilities?

I plan to go to China in the spring to do outreach through the Greenberg Center and LPA. Julie Hoover-Fong, the director of the Greenberg Center, may go on the trip as well. We will visit orphanages and work with adoption agencies to advocate for people with disabilities who wish to adopt. The highest numbers of children who are adopted internationally come from China, but that country still has some discriminatory practices against people with special needs who wish to adopt. For example, parents with disabilities are only able to adopt children who have the same disability. In other words, a person with achondroplasia, like me, wouldn’t be able to adopt a child with vision impairment. We have to work closely with agencies to try to overcome this type of obstacle. 

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