Patient Spotlight: Kathleen Downes

Kathleen Downes with Dr. David Roye

Meet Kathleen Downes:

I am 26 years old and from Floral Park, NY. I am a licensed social worker and a two time graduate of the University of Illinois at Urbana-Champaign, where I earned degrees in Community Health/Rehab Studies and Social Work.  While at the university, I lived in a supported residential setting for people with significant physical disabilities called Beckwith Residential Support Services. I have quadriplegic cerebral palsy and enjoy advocating for disability rights. I currently coordinate workshops for the families at an adaptive dance program called Dancing Dreams and write my own blog, The Squeaky Wheelchair. My work has also been featured in Huff Post and Women’s Media Center.

How did you find the Weinberg Family Cerebral Palsy Center (WFCPC):

I was already a patient of Dr. Michael Vitale’s at the Morgan Stanley Children’s Hospital as a teenager and I knew of Dr. David Roye because he operated on many of my friends as children. Luckily, the WFCPC was opening just as I was due to age out of the pediatric system and my mom found out about the initiative at a conference in 2012. We were and are so grateful that I am able to continue receiving care as an adult because there is such a paucity of knowledgeable providers when it comes to cerebral palsy–without WFCPC I wouldn’t really have any options. 

My first interaction with the Weinberg Family CP Center was working with Dr. Heakyung Kim, who is an incredible doctor and a great person. I recently had a hip osteotomy with Dr. Roye after dealing with persistent hip pain and he has been so kind and I am very appreciative of all he has done to help me.

How has the Weinberg Family Cerebral Palsy Center impacted your care:  

CP is traditionally classified as a “children’s condition” when it is actually a lifetime condition. We don’t disappear into thin air at age 18 and our healthcare system must reflect that. One of the goals of medicine has historically been to give people with disabilities and medical conditions long lives–but to ensure long lives is not enough. We need comprehensive care that ensures not just length, but quality of life through the years. Generally, turning 18 with a disability is like falling off a service cliff in every aspect of life. Even though adults with disabilities have always been and always will be here, the larger medical community (and society in general) tends to treat us like unicorns…and often greets us with a sort of, “what do we do with you?” attitude. It’s super frustrating to essentially remind doctors on a regular basis that you do, in fact, exist.

The existence of WFCPC means that I have a place where people are well-versed about my disability and a place where I don’t have to deal with the too-familiar feeling of abandonment by the healthcare system. It would be the easy choice to turn away from the daunting task of bridging the pediatric-adult care gap, but these providers have instead made the choice to turn towards us, to support us, and to play a part in changing the culture of care. That means a lot to me!

What is one thing you would like people to know about the Weinberg Family Cerebral Palsy Center?

The work that the Weinberg Family CP Center is doing is crucial. There is no age limit on the need for quality medical care. I’m so glad WFCPC recognizes that we adults with CP are here and we’re not going anywhere.

Weinberg Family Cerebral Palsy Center honored at 2019 Cerebral Palsy Foundation Gala

(Debby Weinberg and David Roye, MD, accept one of the three Excellence Awards given out at the gala) 

The Cerebral Palsy Foundation hosted their 2019 Design for Disability Gala, on October 28, 2019. This annual benefit event provides an opportunity to recognize and celebrate the positive impact being made to improve the lives of people with disabilities through healthcare, research, and design. The Master of Ceremonies for the evening was Jason Benetti, an ESPN and Chicago White Sox Sports Announcer with cerebral palsy (CP).

The Weinberg Family Cerebral Palsy Center (WFCPC) was honored to be one of three Excellence Award winners of the gala. Specifically, the WFCPC was recognized for the commitment to lifespan care for individuals with CP.

“The Weinberg Family Cerebral Palsy Center is humbled and honored to receive this award,” said Dr. David P. Roye, Jr., Executive Medical Director of the Center. “We are proud to have a partner like the Cerebral Palsy Foundation, whose mission so closely aligns with our own a commitment to making a difference and improving the quality of life for people of all ages living with Cerebral Palsy. The resources that the Cerebral Palsy Foundation offers to patients and caregivers are integral to supporting the medical care provided by our faculty and staff. We look forward to working together in service to our patients and the cerebral palsy community, and want to thank the Cerebral Palsy Foundation for this tremendous honor.”

The event also featured an innovative line of accessible accessories created by a partnership between the Fashion Institute of Technology (FIT) Master of Fine Arts program in Fashion Design; Barbara Bradley Baekgaard, Co-Founder and Chief Creative Officer of Vera Bradley; and the Cerebral Palsy Foundation.

To learn more about the lifespan care offered at WFCPC for individuals with CP, click here.

To learn more about the Cerebral Palsy Foundation, click here. 

Cerebral Palsy and Genetics: Learning What We Don’t Know

Click here to RSVP

2018 Marilyn R. Lindenauer Distinguished Speaker Series:

Cerebral Palsy and Genetics: Learning What we Don’t know

Cerebral palsy and genetics studies over the last few years have revealed that at least 30% of CP has a genetic basis. However, the suspicion is that even more CP cases have a genetic basis that we have not yet established.  Our interest is to develop projects that will allow us to identify these important genetic relationships.

The issues being discussed by the panel are cutting edge and will have important implications for patient care – “precision medicine” for CP. Those whose clinical or research interests revolve around childhood onset neurodevelopmental disorders will be fascinated by this discussion of the genetics of CP.

The panel will be moderated by David P. Roye, Jr., MD, Executive Director, Weinberg Family CP Center, Department of Orthopedic Surgery.

Reception to follow 6 -7 pm

Cerebral Palsy and Genetics Panelists

The Missing Links: The Need for Transitional CP Care

Throughout the United States, children’s hospitals have extensive experience treating kids with cerebral palsy and similar neuromotor disabilities. However, when these patients turn 18, their care options dwindle and other complications associated with aging arise. Weinberg Family Cerebral Palsy Center (WFCPC) Executive Director David Roye, MD has made it imperative to be on the forefront of transitional CP care and research.

Continue reading “The Missing Links: The Need for Transitional CP Care”

Weinberg Family Cerebral Palsy Center Goes International

The mission of the Weinberg Family Cerebral Palsy Center isn’t confined to the borders of North America. Executive Director Dr. David Roye and his team of CP experts have organized multiple international medical missions throughout Asia in 2016 to spread the Center’s care philosophy and understanding about Cerebral Palsy and related disabilities. Their destinations: Japan and China.

Continue reading “Weinberg Family Cerebral Palsy Center Goes International”