Due to COVID-19 precautions, video visits using Epic Telehealth are available for new and existing patients. In-person visits will continue to be available for patients in need of urgent, in-person care. Find out more about your telehealth options here.
Columbia Coronavirus Resource Center
During these turbulent times, we would like to remind you to be aware not only of your surroundings, but of yourself. Stay healthy by recognizing the signs and of COVID-19:
Clinicians and researchers at the Columbia University Irving Medical Center are global leaders in responding to COVID-19. In addition to being at the forefront of the clinical and scientific response to the virus, CUIMC is committed to keeping patients and the CUIMC community informed about COVID-19. Information is updated throughout each day as the impact of the virus changes locally and nationally. Visit here for the Columbia Coronavirus Resource Center.
NewYork-Presbyterian COVID-19 Hotline
If you have concerns regarding COVID-19 you can call the NYP hotline at 646-697-4000. This hotline is available as a public service to provide information only and not to diagnose, treat, or render a medical opinion. More info here. For more information on what to know about COVID or for frequently asked questions go here.
Mental Health Resources
Due to COVID-19 and the unprecedented circumstances that have come with this crisis, it has created a great deal of stress and uncertainty for the community of patients, families, and healthcare staff. If you would like to speak with one of our licensed social workers about this in further detail, please schedule an appointment by calling 212-305-5616.
For online mental health resources, the Department of Psychiatry at Massachusetts General Hospital has curated resources for providers and those they serve into five domains here.
Columbia Fever and Cough Clinics – Call your provider to see if you qualify to be referred to the Fever and Cough clinics. These fever and cough clinics are available to patients who have first been screened (either by phone or via Telehealth) by one of Columbia University’s healthcare providers, and who are experiencing respiratory illness (fever, cough, nasal congestion, sore throat).
Capsule – Free same day delivery pharmacy including over the counter medication. This has been a resource many in our patient community have found useful. *(The Weinberg Family CP Center is not affiliated with Capsule by any means.)
The health, safety, and well-being of our patients is top priority here at the Weinberg Family Cerebral Palsy Center. If you have any questions regarding physical or mental health concerns, please call us at 212-305-2700.
(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.
On Friday, February 28, 2020, the Weinberg Family Cerebral Palsy Center hosted our Second Annual Adaptive Ski Trip. We had six patients, ages 10 to 35, and their family members who joined us at Windham Mountain for a beautiful day of skiing and fun!
The patients participated in ski lessons, led by certified instructors from the Adaptive Sports Foundation. ASF has been providing sports and recreation opportunities to thousands of children and adults with both cognitive and physical disabilities since 1984. For almost every single patient that joined us this year, it was the first time they had ever been skiing or on the mountain with snow. The reactions of the patients were just as great as the parents. “We had such a great time, I have to figure out how we can make this happen more often, this has really changed my child’s life,” said one mother.
A special thanks to faculty and staff at the Weinberg Center for making this day possible!
Note that the author prefers identity-first language (e.g. referring to oneself as a “disabled person” rather than a “person with a disability.” However, both terms are used in the following piece.
More elusive than the Loch Ness Monster! Less media coverage than squirrels eating cheeseburgers! Harder to spot in the wild than Bigfoot! Who are we? Disabled adults! If you went based on the media and most existing social service systems, it would be easy to think that folks with cerebral palsy (CP) vanish into thin air when they turn 18 in a triumphant blaze of paperwork. But don’t believe the stories. We’re here, lurking in your very neighborhood! Jokes aside, we’re actually everywhere…doing mundane things like working, going to school, and complaining about the lack of walker color options once one grows out of the pediatric size.
Do you have a kid with CP? Are you confused by all the acronyms in disability land? Are you wondering what life will be like for your child? Putting on some AFOs (leg braces) and wondering how people survived before Velcro?
It can be overwhelming looking for information and finding the best resources for (and with) your loved one with CP. But as you embark on this adventure, don’t forget disabled adults. We are a unique and tremendous resource. I am 27 years old and I love meeting kids with CP. Besides enjoying the nostalgia rush when I see tiny AFOs with pink straps, I truly enjoy showing younger people with CP the way. It is the honor of my life to play some role in helping the next generation of “my people” thrive. And when we work together, there is less fear, more joy, and more rousing discussions about cute sneakers that fit over AFOs.
I cannot speak for all adults with CP, but as one member of this fabled, fabulous group, here is some of what I’ve learned and would like to tell parents and guardians without CP raising kiddos with CP:
We are the real experts and carry with us a trove of real-life experience.
Adults with CP have a perspective that no non-disabled parent, sibling, therapist, or doctor can offer. We have the scoop on cool camps, recreational programs, and equipment. Most importantly, we know exactly how it feels to have CP. Want to know what life is like with CP? Listen to those living this story. Our perspectives are often ignored and drowned out by the opinions of parents and professionals without disabilities. But if you want real (probably overpriced, adapted, AFO friendly) boots- on- the- ground experience, adults with CP are your best source… because we’ve been there.
Help your child connect with other people who have CP and other disabilities early in life.
Community is so important. Peers who are living with CP and other disabilities can offer support and camaraderie that no one else can. The disability community has its own history, humor, and rituals. Our shared experiences are vital. In fact, a 2017 research study by Silverman et al. concluded that young people who have friends with similar disabilities report a higher quality of life. The sense of belonging among my disabled friends has sustained me throughout my life and given me pals to turn to for those “found a fry on my footrest before giving a speech” moments that…well, only make sense if you’ve been there.
Ditch the “overcomer” narrative.
Society puts a lot of pressure on kids and adults with disabilities to “overcome” the disability. Mainstream culture has told us that we are victorious, successful, and courageous if we minimize our disabilities or encourage others “not to see the disability.” However, many of us feel that CP is a part of who we are and should not be treated as something to overcome– because it’s not a negative trait. Having CP comes with many struggles, but also with many joys, like the people and places I’ve come to know because of my disability. The expectation that I should overcome an essential part of myself is deeply upsetting. Instead of focusing on overcoming my CP, I prefer to focus on living well in a disabled body. If you can’t see my disability, you can’t see a full picture of me.
Don’t be afraid of mobility aids.
Unfortunately, many people have been taught that wheelchairs, walkers, and crutches are symbols of “giving up.” But assistive devices do not have to be constraints—think of them as tools. My wheelchair has allowed me to keep up with non-disabled people, go out without an assistant, and navigate without fear of falling. If anything, my wheelchair has made me more independent, safe, and comfortable. What if we reframed assistive devices as symbols of freedom? There’s still time!
Be prepared to talk about ableism.
Ableism is discrimination and prejudice based on disability. Sadly, every adult with CP can share multiple instances of ableism. It doesn’t always look like overt bullying. Sometimes, it looks like an event not made accessible for wheelchair users. It can look like the exclusion of disabled folks in the media. It can look like being passed up for a job interview when the employer gleans that you have CP. Conversations about ableism are difficult and often uncomfortable but always necessary. Naming these occurrences will help your children to feel that their experiences are valid and fully acknowledged. Helping young people with CP to cope with ableism is essential to supporting their mental health. Helping them to cope also means knowing that many experiences with ableism can’t be fully understood by someone without a disability. The best way to be an ally in these cases is to listen.
Know that independence looks different for everyone.
The stereotypical idea of independence for people with CP is walking unassisted and performing all activities of daily living on one’s own. But independence is not one-size-fits-all and it doesn’t have to mean doing everything on your own. For me, independence means hiring and supervising my own personal care assistants—I will always need help but I want choices about who helps me and how they complete their tasks.
And finally…Don’t let therapy rule your life… the occasional “day off” won’t halt the universe.
My mother and I were recently reminiscing about when I was a little girl and she felt like I would shrivel up and disappear if I missed one session of physical therapy (PT). I am fortunate to have had great PTs, but sometimes a skip day can be a good thing. Don’t get so bogged down with appointments that you forget to live. In retrospect, we wish we had realized sooner that the world doesn’t stop turning if one day Dollar Day at Carvel sounds better than physical therapy. It tastes better too!
So, if you have a child with CP and they see me on the street, please stop and say hello! I am eager to compare wheelchair colors, blabber on about how your kid should go to summer camp, and compliment them on their cute AFOs.
Most of all, I want to show kids with CP that adults with CP exist…and we are rooting for them in everything they do.
So, if you have a child with CP and they see me on the street, please stop and say hello! I am eager to compare wheelchair colors, blabber on about how your kid should go to summer camp, and compliment them on their cute AFOs. Most of all, I want to show kids with CP that adults with CP exist…and we are rooting for them in everything they do.
Kathleen is a 27 year old from Floral Park NY and one of the Weinberg Family Cerebral Palsy Center’s first patients. To learn more about Kathleen check out her patient spotlight here.
My name is Tucker Salovaara and I was born and raised in New York City. I’m 27 years old and I have been a patient at the Weinberg Family CP Center since it opened in 2013. I work for a great organization called Theater Breaking Through Barriers (TBTB) as a social media manager. They put on really interesting plays and it is a great group of people dedicated to making sure that we in the disabled community are included in the theatre. Throughout my life I have learned to advocate for myself. Because of my disabilities, I have had to work extra hard to prove to people that I can do anything that I put my mind to.
I was fortunate to be an intern at the Mayor’s Office for People with Disabilities after I graduated from college. That was a great introduction to people and organizations that can make a difference. I have greatly enjoyed getting to know more of the disabled community through my work with the MTA Access-A-Ride Committee, which works on improving services in public transportation. We have made some good progress but obviously have a lot more room for improvement before those of us in wheelchairs can get around as easily as our able-bodied peers. I also volunteer my time to work for an organization called AXS Lab/Map as a web accessibility consultant. They provide information to help people get around town by rating accessibility of businesses and public places. I try to stay “plugged in” with the greater disability community through Google groups, listservs, and participate in protests and attend hearings on important topics relevant to our community. I also participate in the Weinberg Center’s support group for young adults with CP, which has been a nice way to meet new friends who face similar challenges.
Why Being Active in the Disability Community Matters:
You Are Not Alone. We are all in this together! One of the most important lessons about advocacy is that together we are stronger than if we go it alone. Even if you don’t think you initially have a lot in common with others, you will share similar experiences and find common goals.
Your Voice Matters. What you have to say is important. Your experiences may shed light on additional issues that others have not thought about. Change only happens when people make the effort to speak up about their concerns!
You Can Make a Difference. In order to promote change, you need to want to change something. What is it that would improve your life?
Put Your Ideas Into Action. The other critical piece is acting on your beliefs—As Gandhi said, “Be the change that you want to see in the world.”
Be Open to Trying New Things. Always have an open mind and an open heart. You might just be surprised by your own ABILITIES!
I think that many people in the disabled community are afraid to get involved because they are afraid of being adversely judged or being rejected. It’s corny but never forget—nothing ventured, nothing gained!
My advice to those who feel afraid/judged or don’t know how to get involved would be:
Don’t be afraid to share your opinion, because your voice matters
Think outside of the box, try different things and find something with a group atmosphere, like a support group to get started, so that you can feel more comfortable getting involved
Be confident. Every story matters and no one can argue with your experience!
Don’t be passive. Be bold in spite of what you think people expect of you or how they may judge you
Push yourself to try something new--even if you feel vulnerable, try it–you might like it! That is what happened to me with the WFCPC support group, which I really enjoy.
For me, getting involved with the MTA Access a Ride Committee helped me put my frustrations with transportation in NYC into action. I was fed up with the system and wanted to do something about it. People had to listen and I was no longer being passive. Now, I help the MTA by testing and reviewing new products and initiatives like the Access A Ride app which helps riders track their rides. We also have a pilot program through Curb for wheelchairs which is much quicker than AAR vans.
Having grown up on the Upper East Side, I was constantly aware of visitors’ challenges with accessibility issues in Central Park. I had an idea to create a map of accessible pathways and worked with the NYC Parks Department and the Mayor’s Office for People with Disabilities on such a project. I tried to come up with a solution to a problem that I saw shared by many others.
If I could empower anyone by saying something, it would be “Don’t be afraid to share your ideas and fight for your rights.” We need more people advocating for and in the disability community because improvements are needed and our lives matter.
Tucker is a patient of the Weinberg Family CP Center and an active member of the adult support group. To learn more about Tucker, check out his patient spotlight here.
Sitting down to write this blog post, I can’t help but chuckle. If someone had told me, even a few years ago that I would one day offer advice, on life as an adult with CP, chances are, I would have laughed in your face and said, “you must be mistaken, you got the wrong guy.” Everyone that knows me has heard me say, “I am the world’s worst disabled person,” and that “I should get my CP card revoked.” You see, my parents and caretakers always played down my disability, making me believe I can do anything in spite of it. In large part that has worked out well. With their help I’ve been able to do amazing things like climb to the top of the Acropolis in Greece or go into the deserts of Morocco.
As I got older, my disability started affecting me in new ways and that took a lot of getting used to. Despite the progress I’ve made, I have a long way to go. With that being said, I would like to share with you what I’ve learned up until now. So, without further ado, here’s my imperfect list of tips and advice for a healthy and happy adult life with CP:
1. You have CP. It affects your life, but it doesn’t define who you are.
Like many of the items on this list, this piece of advice is deceptively simple. We all know that CP manifests itself in different ways. I use a wheelchair. When people see me coming down the hallway, they know I am disabled even if they don’t know I have CP. I have other friends who use canes, others who can walk unassisted and even drive by themselves. However, we pretty much all have people in our lives who care for us and help us see to our daily needs. Typically, these people are either aides or parents. In my experience these caretakers have two extremes. Either they are too scared to acknowledge that we have CP and therefore life has to be different for us in some ways, or they are overprotective and want to wrap us in cotton to make sure nothing ever happens to us. The tricky part is for everyone to find their own definition of what a life with CP means.
For instance, over the years I’ve learned that you can acknowledge your CP and can make jokes about it without giving into it. These jokes may be distasteful and unsettling to our caretakers but acknowledging that CP is a part of our lives and something we deal with everyday is by no means admitting defeat. Besides, there is a lot of good that can come of it. For example, I am a diehard opera fan. It’s one of the greatest joys of my life. It even helps me through not only the daily challenges of life with CP but also the long-term ones. And yet, part of the reason why opera is so special to me, is because one of my aides who I am still in touch with, gave me my first recording of an opera when I was two years old. Part of the art of living with the disability is recognizing and celebrating the good while having the strength and patience for the time when things get hairy. Also, it’s important to have perspective and don’t sweat the small stuff because:
2. The way you interact with your disability changes as you get older.
When I was little, I thought being disabled consisted only of needing assistance with activities of daily living. Just so we are clear needing help to bathe myself, dress myself and use the toilet was annoying then and is annoying now. However, when I was little, I wasn’t interested in girls nor was I looking for a relationship. Now that I am looking for those things at the age of 29, I am fully, sometimes painfully aware of how my wheelchair is perceived in a social situation. The good news is when you really want something you understand better what’s really important to you at this point in your life. All of a sudden, the petty annoyances like needing help with toileting are not that important. Also, once you figure out what’s really important to you, you can think of a plan to get it. This means taking a long hard look at the challenges that CP poses to achieving your goal. Once you’ve done that you have to realize that:
3. In order to achieve your goal, since you have a disability, you might need to think outside the box, and look for unconventional solutions.
When I was in my first year of grad school, the movie, “The Sessions,” came out. In the film Helen Hunt and John Hawks star as a sex surrogate and a disabled client. After the film, I published an essay in Salon magazine about the challenges of having a physical disability and wanting a relationship. About six years later, I’m happy to say that I have made progress in that area of my life. But, that progress only occurred when I allowed myself to become more comfortable with my disability. I had to realize that because I have CP, I have to live with it and therefore think outside the box. For me, part of that process was acknowledging that I needed extra help for simple activities like having sex, which able-bodied people take for granted. Fortunately, I have a great group of friends who, by simple acts like taking me to the bathroom, have done more for my independence than they will ever realize. Which brings me to my next point:
4. It’s okay for adults with CP to ask for help from friends.
Just because we are disabled doesn’t mean that people who take care of us need to be medically trained aides or nurses. Once you come to this realization, the simple acts that people do, like pushing you around the room at a Hanukkah party so you can meet people, take on a very special significance. This is true, no doubt about it, but implicit in that realization, is the fact that you are not a burden just because you are disabled. The right group of friends will help you with your daily needs simply out of the goodness of their heart. As hard as it is to believe, it is not worth being stunned over. To this day I still have trouble with this. Even so, it is always of paramount importance to recognize the progress you make towards your own independence even in the most mundane of activities. It gives you perspective and makes you appreciate just how much you can do on your own in spite of having a disability. Additionally, while there are good people who will help you for no special reason other than their own nature, it is extremely important to make sure that these people know, whether they be aides, family or friends, that they are not expected to go out of their way to do anything extra for you. I always tell my aides, “Anything extra you want to do is appreciated but not required.”
5. Always have a back up plan.
People who help you need to know that they can say no to you. If they can’t then you become a burden on others. The relationship between the disabled individual and their friends or aides is a surprisingly intimate one. I for one get annoyed when people compare the work of an aide to the work of an employee at an office job. Those people are not required to take their bosses to the bathroom or see them naked in the shower. As a result, there has to be open communication and people who help you need to be able to have a life of their own. It’s important that aides should never see their work as a chore. Yet at the same time, as you grow and your needs change, your aides have to realize that you are not helpless. They might be there to assist you, but you are certainly not in their charge. You are an adult and not a baby, and you should not be afraid to speak for yourself. That being said, accidents will happen, and the road will occasionally get bumpy, so having a back up plan is key.
6. Learn the art of anticipating what cannot be anticipated.
If you made it to this point in the article, you should be comfortable with the fact that despite wanting your independence, you are disabled and people around you will always see you to some extent as being disabled. You will always be a child to your parents. This is something that is really hard to navigate if you are able-bodied, let alone if you have a disability. There will be setbacks, you will fall down, sometimes literally, as in my case when I fell down two steps in my wheelchair in Battery Park. Ever since then my parents become extremely nervous if I am even within a five-mile radius of stairs. Alright, maybe that’s an exaggeration but you get the idea. But you can’t let that stop your drive for greater independence. All you can do is reassure people that you will be safe, and take your safety seriously above all.
At the same time falling down two steps which were difficult to see is actually an apt metaphor. Life with a disability will always be challenging no matter what. You will find yourself in situations that may seem impossible. And, although I may have a sick mind, I believe the challenge is part of the fun. The first thing you must do when life gets rough, regardless of whether you are disabled, is not to panic. Take a deep breath, you can still point your finger at the ceiling and shake your fist at God, but don’t panic. You will get through this, even if you need help. And, nine times out of ten, surprisingly you don’t. The key to life with a disability is a cool head, and the recognizing that life with a disability might be a challenge, but it’s an external one. Keep your humor, keep your passion, keep your drive, accept help when needed and above all keep your disability external. Of course, it’s a part of you but it doesn’t define you.
Greg is 29 years old with CP and found the Weinberg CP Center through Dr. David Roye. He has felt the need to meet other people with cerebral palsy who are also strong, smart, and independently minded and has found that in many ways, one being the WFCPC support group. To learn more about Greg, check out his patient spotlight here.
I was born and raised in New York City. I’m 27 years old and work part-time for a theater company called Breaking Through Barriers. My job duties are updating the website and social media platforms. In addition, I strive to make the content more accessible for everyone. An example of this is adding alt-text to each image for blind users to listen to the description with their screen readers. Besides working, I am a very outgoing guy who always tries to be more involved in the disabled community and other communities.
How did you find the Weinberg Family Cerebral Palsy Center (WFCPC):
I found this center when they were first starting this program. My beloved Dr. Roye, who saw me through my childhood wanted to start this program to enhance medicine for people with Cerebral Palsy. Even though I don’t have Cerebral Palsy, I fell in the category and Dr. Roye encouraged me to join the program because when I was 18 years old, he had to surgically rebuild my feet and he thought I would benefit from joining.
How has the Weinberg Family Cerebral Palsy Center impacted your care:
The center has impacted my care by helping me feel like I’m not alone and if I have a complicated health issue, I can trust that the team can solve it. Before this center, when you turned 21 years old, you are lost in the system. I feel like this support system is so crucial for people who have a lot of pain and other life-threatening health problems. Thankfully, knock on wood, I haven’t had any major health issues in regards to my orthopedic condition. However, I will always have this incredible system if I ever need it in the future.
What is one thing you would like people to know about the Weinberg Family Cerebral Palsy Center?
One thing that people should know about is that we are all in this together. This past year, I joined the Weinberg Family Cerebral Palsy support group and it has changed me to be more social in my community and it showed me that I’m not alone. Back when I was in high school, I thought I was in the best social bubble of my life, but when I graduated I had trouble finding a similar support system. When I first joined this support group, I was skeptical because I didn’t feel like it was helping me within the first couple months, but when I gave it a chance and fully opened up, something clicked and it felt like I was back in a supportive social bubble. That being said, I highly recommend anyone who has a similar disability to check out the Weinberg Family Cerebral Palsy Center. You never know unless you give it a shot!
It is with bittersweet feelings we announce the upcoming retirement of Dr. David Roye, executive director of the Weinberg Family CP Center, effective January 31, 2020. To ensure continuity of care, Dr. Roye has arranged to transition his patients to one of his following colleagues; Drs. Michael Vitale, Joshua Hyman, Benjamin Roye, and Paulo Selber. Please be assured that our staff will do everything they can to make this transition as smooth, and as stress free, as possible. If you have questions about your care structure please contact (212) 305-4565 or email us at email@example.com or firstname.lastname@example.org. Though Dr. Roye will no longer be seeing patients, he will remain in an emeritus role with the department of pediatric orthopedic surgery and the Weinberg Family CP Center.
“If I do not have the opportunity to see you in the office before the end of January, I want to personally wish you lifelong health and happiness, and thank you sincerely for entrusting me with your care.” – Dr. David Roye
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.
The 39th Annual Meeting of the Israeli Orthopedic Association (IOA) featured several lectures from Dr. Paulo Selber of the Weinberg Family CP Center. Orthopedics. IOA took place December 11-12 in Tel Aviv, Israel and is an annual meeting founded by the Israeli Medical Association. IOA provides education and practice management services for orthopedic surgeons whose practice includes disorders of bones, joints, ligaments, muscles, and tendons. This year the meeting had over 1,000 attendees.
See below for the outline of Dr. Selber’s lectures at the conference:
Wednesday, December 11
Phases of Grief in Parents with Children with Disabilities.Paulo Selber, MD.
Thursday, December 12
Specialty Session – Pediatrics Orthopedics Part I
Crouch: a Multi Factorial Gait Disorder.Paulo Selber, MD.
Treating a Flexed Knee Gait without Compromising the Pelvis and Lumbar Lordosis. Paulo Selber, MD.
On November 7, the 2019 Marilyn R. Lindenauer Distinguished Speaker Series hosted Anna Penn, MD, PhD, who discussed “Novel Roles of Placental Hormones in Newborn Brain Injury” at the Vagelos Education Center at Columbia University Irving Medical Center (CUIMC).
Dr. Penn is a neonatologist and developmental neuroscientist at Children’s National Health System in Washington DC. She is an Associate Professor of Pediatrics at George Washington University School of Medicine, with appointments in the Children’s National Fetal Medicine Institute, Neonatology and the Center for Neuroscience Research. In January 2020, she will join Columbia University as the Chief of Neonatology in the Department of Pediatrics.
The Speaker Series was established by Drs. S. Martin and Ms. Marilyn R. Lindenauer in 2013 and provides an opportunity for the Weinberg Family Cerebral Palsy Center to host lectures by medical professionals from around the globe to discuss groundbreaking new ideas and emerging technologies related to cerebral palsy patients.