Category Archives: Blog

Why I View My Cerebral Palsy as a Blessing

By Ashley Mohesky

Cerebral palsy (CP) is a neurological disorder that prevents the brain from communicating to the muscles. There are different types of cerebral palsy, but everyone with the disorder goes through challenges that affect the muscles in some way. Aside from the muscles not being able to function properly, there are some cases in which a person might deal with involuntary movements, which can be extremely frustrating. Although there is much negativity towards CP, it can actually be a good thing. I believe it allows you to have a unique life and also to teach others lessons that can be truly inspiring.

All throughout my life, I have dealt with obstacles — from difficult surgeries to having to prove to people that I am a contributor to society. But I don’t consider CP the end of the world, and you shouldn’t either.

I’m writing this article to tell everyone who has CP or is around someone with the disorder that it is OK to love all the challenges faced head on every day, even when you are having an extremely tough day. Don’t let the challenges of CP keep you from going for your dreams, despite what other people may tell you.

Click here to read the full blog from The Mighty.com

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.

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