CPRN Holds First Annual Investigator Meeting

The Cerebral Palsy Research Network (CPRN) is converging on Houston, TX this week for its first multi-day investigator meeting at Texas Children’s Hospital. The goal of the meeting is to accelerate the number of research concepts being developed into full-scale studies that address the priorities set by its Research CP agenda setting process conducted in 2017. Thirty investigators (investigators are typically medical professionals or scientists) and three community advocates including two parents of children with CP and an adult with CP, will spend the next two days discussing network and registry progress, new study concepts and gaps that need to be filled in our patient-centered research agenda. The CPRN investigators, along with a senior official from the National Center for Medical Rehabilitation Research (NCMRR), Deputy Director Ralph Nitkin, PhD, will examine how CPRN research plans fit with the National Institutes of Health (NIH) strategic plan for cerebral palsy (CP). This is an important step to involve NIH.

CPRN was founded in 2015 to address priorities that came from an NIH workshop on CP the prior year. CPRN facilitates its research through virtual meetings of investigators from more than 20 centers across the U.S. and Canada. Investigators have been meeting via web conferencing to advance the CPRN clinical registry and several lines of study in CP. Last year, CPRN, in partnership with CP NOW, received funding from the Patient-Centered Outcomes Research Institute to organize a patient-centered research agenda so that research efforts in CP would be directed to questions that the community found most pressing and most important. CPRN already has five study lines funded and being developed, three additional studies awaiting funding decisions and five new concepts planned for review at the meeting. CPRN investigators are excited by the research momentum and the potential for changing outcomes for people with CP.

CPRN thanks Aloysia Schwabe, MD and Texas Children’s Hospital for hosting our inaugural investigator meeting!

CPRN Receives Funding for Research in Epilepsy and CP

The Cerebral Palsy Research Network (CPRN) is proud to announce funding for “Enhancing a Multidisciplinary Research Network for Research and Quality in Epilepsy and Cerebral Palsy” from the Pediatric Epilepsy Research Foundation (PERF) in conjunction with Nationwide Children’s Hospital (NCH). Principal Investigator Adam Ostendorf, MD, pediatric neurologist at NCH, partnered with CPRN to submit this grant application. The award will provide $200,000 in funding to add an epilepsy study group to CPRN, define important data to collect and enable research and quality improvement initiatives for treating children with cerebral palsy (CP) and epilepsy.

This following introduction to the grant from our application provides a great summary of the importance of this effort.

The consequences of seizures and their treatment exert influence on concurrent conditions and are best studied collectively. Epilepsy occurs in nearly half of individuals with cerebral palsy (CP), is difficult to treat, and negatively impacts patient and family quality of life. However, seizure-focused therapies may worsen movement disorders, bone health, nutrition or behavior. A knowledge gap currently exists despite the extensive overlap of these common neurological disorders and is perpetuated by a lack of infrastructure capable of addressing it. Specifically, we do not know the best therapies to control seizures while minimizing side effects. Furthermore, quality measures play an increasingly large role in neurology practice, yet their effects and implementation are not understood. A research infrastructure capable of studying epilepsy management and outcomes in patients with CP is critical to develop more effective therapeutic approaches which limit adverse effects and provide quality care across centers.

Michele Shusterman, CPRN’s Community Engagement Director and author of CP Daily Living, wrote a letter of support for this grant application that gives a glimpse into the importance of this research for the community. Her daughter Maya, whom she writes about on her blog, is pictured in this post.

As a parent of a child with both conditions, my child’s struggle with epilepsy has brought me and my husband the most acute grief and worry. The symptoms associated with her CP diagnosis are already difficult for us to negotiate and adding epilepsy to the list makes a complicated set of medical conditions difficult to tease apart and address with any kind of remote clarity. This is especially true when it comes to identifying appropriate medications and treatments that won’t exacerbate behavioral, learning, digestive and sleep disorders that are already present. Epilepsy also adds additional social and emotional barriers that often further isolate families and impacts their quality of life.
It is therefore imperative that every clinician treating people with CP is offering the best, most current treatments available and those that are best suited to balance the unique concerns of people with CP.

CPRN would like to thank our advisor Deborah Hirtz, MD, for introducing us to this grant opportunity and PERF for funding this study of epilepsy in the context of children with CP.

A letter to my Congressman who supported HR620-The ADA Education and Reform Act

A letter to my Congressman who supported HR620-The ADA Education and Reform Act

A letter to my Congressman who supported HR620-The ADA Education and Reform Act

 

Yesterday I told my South Carolina Congressman what I thought of his support and vote in favor of HR620-The ADA Education and Reform Act.  I had just received a response to my letter asking him to vote against this archaic legislation proposal. His reply detailed his enthusiastic support for its passage in the House of Representatives. Fortunately, for the time being, HR-620 has been tabled in the Senate thanks to a successful Dear Colleague letter circulated by Senator Tammy Duckworth. I do worry however, that others will try to reinvigorate similar forms of this legislation down the road and could be successful in getting it passed. It is vital that as citizens we stay informed and advocate for protecting legislation that moves us closer to creating an inclusive society rather than rolling back time and making it even harder for people with disabilities to feel engaged in life and society.

One of the most frequently cited reasons for legislators stating that we need to change ADA relates to cases of frivolous lawsuits and the notion that individuals can be awarded damages by filing ADA claims. But this is a misguided and misleading headline because the problem lies with  attorneys taking advantage of reimbursement fees available under the law–not consumer damages which cannot be collected under ADA. As disability rights lawyer Robyn Powell so eloquently states in an op ed from the May 2017 edition of Rewire.News, “Frivolous ADA lawsuits…are not an ADA issue; they are a state and court problem. Indeed, ethics rules bar attorneys from bringing frivolous lawsuits. Rather than go after people with disabilities, attention should be focused on stopping these few bad attorneys”. 

In a recent blog post from the Disability Rights Education and Defense Fund they shared more about the interests on Capitol Hill that are pushing for these changes, “They say the law is needed to help local ‘mom and pop’ shops, while behind the scenes, powerful trade associations for wealthy corporations—everything from multinational hotel chains to big box stores and corporate coffee shops—are pulling the strings in an effort to gain support for regressive rollbacks to the Americans with Disabilities Act of 1990 (ADA)”. We can work on improving the education, compliance and support measures for businesses to uphold ADA, but we cannot weaken the existing legislation and still move closer to creating the inclusive society this law was intended to facilitate.

Below is a copy of my response to Representative Trey Gowdy. Perhaps my words will not gain traction with him, but I am determined to share my point of view with my representatives and others who don’t understand the epidemic of inaccessibility that still plagues our society. I’m not looking for perfection, most of the time I just want my daughter to be able to get into a place of business and use the bathroom (but certainly we can do better than this). If we go down the path of cutting and carving our ADA legislation, which is actually aligned with many state building codes that have been in place longer than ADA, I fear we will isolate people with disabilities even further.

 

A letter to my Congressman who supported HR620-The ADA Education and Reform Act- 2

Dear Representative Gowdy,

Wow, what a poor and disappointing response. I am quite clear on what Hr 620 does and doesn’t do. Perhaps you should spend a day or a week in a wheelchair and see how inhospitable and isolating the world feels to you. As my letter stated, I am the parent of a child who is a wheelchair user. Ever day we face new construction and buildings constructed well after the passage of ADA that fail to provide the most basic access such as accessible parking, an accessible route to the place of business and accessible bathrooms. In working through these issues locally (and there are so many I could make it a full time job) I have found tremendous apathy, particularly from large developers who submit compliant construction plans to our city and then decide to cut costs and take their chances building non-compliant structures [which trickles down to their tenants having inaccessible businesses].

You are quite out of touch with the experience of people with disabilities to think that this is an appropriate course of action for a society where many business owners we meet often [but not always] feel that following ANY accessibility laws are optional. The onus should NOT be on the individual with a disability who already feels isolated and apart from their community to bring forward accessibility violations. Do you know how long it takes for me to even get someone to pay attention to me about an accessibility concern–often months, or even years! What we need are enforcement and compliance mechanisms that work. The few isolated cases where attorneys pursued cases against business owners for small infractions of the law can be handled through strategies that are created in cooperation with the American Bar Association. Plus the financial damages that were sought were specific to the state law, not the federal ADA law where no monetary damages can be awarded.

Your summary and stance on this issue are poorly articulated and carry little weight with our family and many other people. ADA has been around for almost 30 years and I don’t want to hear that business owners don’t know and shouldn’t know that at the very least their businesses should be physically accessible to people with mobility impairments. Why don’t you try being a bit more creative in handling your concerns about business owners rather than putting up more barriers to ensuring accessibility to people like my daughter? The fact of the matter is that we have a huge aging population (and you too will be there some day) and they, along with other people with disabilities, comprise the largest minority in the US. It only makes economic and social sense to ensure their participation in society without further delay.

Sincerely,
Michele Shusterman

 

A letter to my Congressman who supported HR620-The ADA Education and Reform Act- 3

A letter to my Congressman who supported HR620-The ADA Education and Reform Act- 4

**Permission for the use of the two photos of above has been granted by the photographer Tom Olin. Thank you Tom!

For more information about the myths and truths about HR620 and related accessibility stories, check out these resources:

  1. From the NY Times and opinion piece by Luticha Doucette, “If You’re in a Wheelchair, Segregation Lives”
  2.  How did my representative vote? If you don’t like how they voted tell them your story and why you want them to think about this issue differently.
  3. DREDF-Disability Rights Education and Defense Fund: offers a huge list of resources and information on HR620.
  4. The ACLU offers this excellent piece about the myths and truths of HR620.

 

 

NIH Launches “All of Us” Research Initiative

In March, CPRN posted about its participation in the National Institutes of Health (NIH) research priority setting for the new “All of Us” research program. On Monday, NIH formally launched this program and is now enrolling people in the United States. This incredibly ambitious study will examine the DNA and track the health of 1,000,000 Americans for 10 or more years. It has the potential to create new learning about genetics and other factors that can influence disease and outcomes across the lifespan. It is free to enroll and will provide you with valuable information based on the data the study collects.

The study is open to anyone 18 years of age or older. For people with cerebral palsy, the “All of Us” research has the potential to provide invaluable learning about the long term outcomes in CP in comparison to the rest of the US population. In CPRN’s recently completed Research CP project, longitudinal studies were deemed to be one of the most important constructs for research into CP. While “All of Us” is not specifically focused on CP, the planned outcome measures could uncover important findings about the health impacts of having CP. CPRN will continue to follow this study and look for how we can collaborate with NIH to pursue our research agenda. We encourage you to visit the All of Us website to learn more about participating in this important research endeavor.