Category Archives: Medical Research

Fundraising Effort Focuses on Research to Cure Cerebral Palsy

Will it one day be possible to cure cerebral palsy? Scientists working in a new field of study known as “regenerative medicine” think so. But support is needed to further the research, according to two non-profit organizations founded by parents of children with CP.

Cerebral Palsy Family Network (CPFN) and Cure CP have kicked off “Stand for CP,” to raise money to help extend research currently underway at Duke University by stem cell pioneer Dr. Joanne Kurtzberg.

“Dr. Kurtzberg’s work holds tremendous potential for helping children with cerebral palsy lead normal or more functional lives, but like most research dealing with cerebral palsy, it needs financial support to survive,” said Lisa Viele, parent with CPFN. Donations are being accepted through the CPFN Facebook page.

Dr. Kurtzberg, chief scientific officer, Robertson Clinical and Translational Cell Therapy Program, is conducting a clinical trial involving some 100 children with CP to see if reinfusions of their own umbilical cord blood can help regenerate or repair damaged brain cells. The trial, which is closed to new participants, is scheduled to be completed in January.

Dr. Kurtzberg is considered the world’s leading expert in pediatric hematology/oncology, pediatric blood and marrow transplantation, umbilical cord blood banking and transplantation, and novel applications of cord blood. The Duke program is focused on how to use stem cells to directly benefit children with cerebral palsy and a number of other disorders and diseases.

One hundred percent of the money raised will go to support this research, Ms. Viele said.

“Stand for CP” Also to Raise Awareness

The campaign slogan “Stand for CP” reflects solidarity with those living with the disorder, and also is meant to raise awareness about the prevalence of CP and the challenges that children and adults with cerebral palsy face every day.

“Cerebral palsy is the leading movement disorder in children, with some 800,000 adults and children living with CP at any given time in the U.S., yet it falls way down the list in terms of federal research investment in finding creative treatments. We parents and others must fill in the gap,” Viele said.

Cerebral Palsy Family Network is the largest web-based organization in the world providing resources for families with children living with CP. Cure CP is a non-profit committed to funding the support of cerebral palsy research, with a focus on developing new therapeutic methodologies for the treatment of CP.

To make a donation, visit the Stand for CP campaign page.

Cure CP Continues to Support the Incredible Research Work of Dr. Joanne Kurtzberg

By CureCP.org

Cure CP Continues to Support the Incredible Research Work of Dr. Joanne KurtzbergCureCP.org recently interviewed Dr. Joanne Kurtzberg for their monthly e-newsletter. The following is transcript of their interview.

Dr. Kurtzberg, Duke Medical physician and NIH investigator, is an internationally renowned expert in pediatric hematology/oncology, pediatric blood and marrow transplantation, umbilical cord blood banking and transplantation, and novel applications of cord blood in the emerging fields of cellular therapies and regenerative medicine.

Can you briefly explain regenerative medicine for the layperson?

Regenerative Medicine refers to a new and emerging field in medicine where cells and cell-derived products are used to repair organs and tissues damaged by diseases and or injuries.

How is regenerative medicine being applied currently?

Currently, regenerative medicine is largely an experimental field. There are hundreds of clinical trials ongoing in the USA (see www.clinicaltrials.gov) and abroad, using cells derived from bone marrow, fat, or birthing tissues (cord blood, placental tissue) to study whether they are safe and effective in treating patients with cerebral palsy, stroke, hearing loss, heart failure, myocardial infarction, autism, type I diabetes, traumatic brain injury, joint disease, and other diseases.

How specifically can it work for people with CP?

Selective cord blood cells have unique properties, that suppress inflammation (a common response to tissue injury), promote new brain connections through stimulation of proliferation of oligodendrocytes and neurons, protect neurons from hypoxic (low oxygen) injury, and clean up debris from dying cells in an area of injury. In CP, all of these effects can help generate new motor connections to increase function.

Cure CP is proud to help fund your upcoming non-related donor CP cord blood trial. Can you briefly describe your study?

We have previously shown that intravenous infusion of autologous (a child’s own) cord blood cells, is safe and, when administered at a sufficient dose, improves motor function in children with CP. Because we know that many children with CP will not have their own cord blood banked, we are working to find ways to safely use cord blood from siblings (when available) or unrelated donors. Cure CP is supporting both the preclinical work (IND enabling studies) and the early phases of clinical trials in children with CP who will be infused with donor cord blood.

What are your thoughts on the future of regenerative medicine and potential benefits?

I think that the field of regenerative medicine will lead to the most important new therapies and medical breakthroughs over the next decade.

 

CureCP.org is a non-profit organization (501c3) committed to funding Cerebral Palsy research. Our mission is simple: to undertake and support initiatives at research institutions that focus on developing new therapeutic methodologies for the treatment of CP.

Your Voice Has Been Heard – National Institutes of Health Survey Results

By Paul Gross, Founder of the Cerebral Palsy Research Network

In April, many of you participated in a survey about medical treatments for your child. The survey was intended to help a group of researchers decide on the most important cerebral palsy treatments to study. The survey garnered more than 1,200 responses and your answers were very important in shaping the study questions.

The study, entitled “Enhancing Surgical Decision Making for Families of Children with Cerebral Palsy: A Practice-Based Evidence Study,” was submitted on July 31, 2015 to the Patient Centered Outcomes Research Institute for funding consideration.

Your feedback indicated that invasive surgeries were the most difficult decisions to make in the treatment of your loved ones. If funded, the study will enroll 2,500 patients that are being considered for surgery affecting their legs.

Study on Invasive Leg Surgery & Options

There are numerous surgical treatments that are offered for the legs and there is no research comparing the outcomes of those types of treatments. Approximately 500 children will not go through any surgery and will receive less invasive medical treatments such as oral baclofen, bracing and/or physical therapy. This group will be the “control” to compare to the surgical treatment group. But, unlike other studies that randomize which treatments are selected, this study will simply observe which choices families make and measure the outcomes that they view as important for their child.

The lead principal investigator of this study is Dr. Richard Stevenson from the University of Virginia. There are 18 hospitals across the United States and Canada that will participate in this study. A more in-depth description of the study aims and participating centers can be found on the study website.

We wanted to thank the Cerebral Palsy Family Network for their participation in this survey.

FREE MEDICAL AND LEGAL RESOURCES

The Cerebral Palsy Survival Guide is a free, state-specific resource list for everything from everyday activities to emergency situations.

BI-WEEKLY E-NEWSLETTER SIGN-UP

Sign up for our e-newsletter to receive the latest in CP news, resources and

LATEST BLOG POSTS

Biodex Includes Music Therapy in Its Cerebral Palsy Rehabilitation Treadmill

Daniela Semedo, PHD Biodex Medical Systems has developed the first movement rehabilitation treadmill for cerebral palsy that includes a music therapy component. The Gait Trainer 3 offers both audio and…

Read more

Cheney High Grad Seeks to Raise Awareness of Cerebral Palsy

Adriana Loya Via KWCH.com Like a proud parent, Gay Gower talks about her grandson's accomplishments. "For his use of technology with his chair, he received Infinitech outstanding technology achievement," she…

Read more