Don't Crow About a Cure for Cerebral Palsy

Cerebral palsy is incurable! That is the stark reality for anyone who has a child diagnosed at birth – along with the knowledge that their lives will be inexorably affected by whatever caused the disorder.
Although around one in ten babies born with cerebral palsy (CP) will be affected by some sort of birth injury, it is now considered that other causes, mainly some instance of damage to the brain while the baby is developing in the womb, are the most common reasons for CP in infants.
When you are learning about what the disorder will mean for you and your child, many things will be talked about – therapies, surgeries, medication – but, unfortunately, no cure. And although it is good to know that advancements in these specifics, as well as equipment, education and even attitudes to disabled people are occurring all the time, cerebral palsy is still firmly on the incurable list.
So, it was with some trepidation that I read about a new treatment, being pioneered in the US, claiming to have found a cure.
The study, published in the Science Translational Medicine journal, tells of experiments which helped cerebral-palsied rabbits to regain "almost... normal mobility levels" by the use of nanomedicine (the medical application of nanotechnology – matter on a molecular scale).
If you are affected by an illness or injury the reporting of these so-called cures and miracle studies can be really dangerous. You have to steal yourself into not pinning too much hope on them, but when you read a headline like "Special brain treatment may help the 750,000 US children and adults suffering from cerebral palsy", you can't help but take a small intake of breath and hope with all your heart.
Like countless other trials and studies before it, for all manner of drugs and procedures, this new study has been carried out by a promising-sounding group of medics from some of the US's top study and healthcare centres.
It involves injecting a drug, used for its anti-inflammatory properties, into rabbits' brains via microscopic molecules called dendrimers to specifically target the damaged areas of brain tissue.
The authors say they have proved that rabbits suffering cerebral palsy-like symptoms which received the treatment within six hours of being born underwent dramatic improvements in motor-function.
Apparently, rabbits were used for the research because their brains are closest to humans in that their development takes place partially in the womb and carries on after birth. So, the authors say, there is now an indication that humans may have a "window in time" straight after birth where the damage in the brain can be identified and targeted with a nano-device.
In the various articles I sought out regarding this new technique it was quite clearly stated in all of them that the medics and researchers know they are still some way off being able to provide humans with a treatment for cerebral palsy – so, why do writers of such medical articles feel the need to headline their pieces with such misleading language.
As a reader, and party with an interest in cerebral palsy, all I really want to know is that research is being done, and for their efforts I am thankful to the authors of this study. However, what I do not want is false hope. And for a writer to blithely suggest that this breakthrough "brain treatment" may help those already suffering from cerebral palsy is an inaccuracy of the cruellest order.
Yes, the study has promise. Yes, the authors have proven efficacy in their fields. But, no amount of nanomedicine is going to help those who are living with cerebral palsy now, or those babies, and their families, who will be born with CP in the near future. For these people, the reality is intrathecal baclofen therapy, diazepam, botulinum toxin and selective dorsal rhizotomy – and the seeking of brain injury compensation to help pay for such treatments – because there is no cure for cerebral palsy in the here and now, and these are the realities that CP sufferers and their families face.
So, my request to medical journalists and writers out there is please, please, please be more speculative with your headlines. Don't shout about running when the authors of the research you are reporting upon have not yet said they can walk. Please do not grab at phrases such as "almost... normal mobility" and plant them in the first sentences on a report which suggests that there is a cure on the horizon for a disorder which has thus far been deemed incurable.
Cerebral Palsy is a cruel disorder which wreaks havoc on lives and robs families of "almost... normal" lives. Headlines and news stories purporting miracles really do not help.

Busting Up Bake Sales

If someone wants an issue to be front and center in American politics-do something to make Moms mad. The Obama Administration's latest front in the battle against obesity, is the regulation of snacks and food that are not the requisite breakfast and lunch. First up on the firing line is the beloved bake sale.
In an era of dwindling resources for public schools, bake sales are often the lifeblood of parent organizations, interest clubs and students saving for class trips. While obviously not the bastion of health consciousness, they are capable of bringing in serious money for cash-strapped school with some schools reporting they were able to raise up to $50,000. So what is a regulator to do? Address the rapidly rising rates of childhood obesity or anger Moms and students alike with an all out ban?
Unfortunately, like too many issues mired inside the Beltway, this is not an either or situation. It is, however, one that requires leadership willing to address the real issues instead of dealing with Band-Aid solutions. So what's going on here?
As much from a perspective as a Mom as well as a leadership expert, it seems most politicians are unwilling to discuss the fundamental importance of effective parenting in the outcomes for children. Regulators and advocates try to skirt this issue by addressing touchy subjects with overarching approaches that end up failing everyone. Blanket approaches are taken to address one issue that ends up causing another-or more. Preaching to families to eat healthy foods is great and if there is no culture, resources or real-life reference points to support a switch to fruits and vegetables from junk food, it simply isn't going to happen. (Moreover, the real issue is what is going on in the lives of these families, that is the parents, that they anesthetize themselves and their kids with food, rather than opting to live healthy, balanced lives.)
So in an effort to address obesity in families that clearly needing broader support than admonitions to eat more greens, the political answer comes in the form of banning a cultural tradition that many enjoy. Perhaps the Department of Agriculture could consider the following leadership basics of building support and real-life solutions:
· Create Connections: No greater network exists than parents of school-age children. Many would agree with the basic precepts of healthy eating and encouraging that behavior in the schools and no one wants to be told they can't do something they have always done and enjoyed. Talk with those who will be impacted by your decision before the news stories hit the stands.
· Manage the Pace of Change: While change is fundamental to life, people can only take so much at one time. Has anyone at the USDA talked to the Department of Education to find out how much money is being cut from schools? Perhaps a bit snarky, and yet, when a group is already under siege attacking a tradition can be the straw that breaks the camel's back.
· Create Buy-In: Change doesn't take place by telling other people what to do, change happens, as people are inspired to make other choices. By engaging parents and schools in genuine discussions around healthy eating across the spectrum of students' lives new approaches and workable solutions can more easily be found.
· Engage Everyone's Talents and Skills: One of the biggest complaints against federal regulation is the feeling that someone without any connection to a person's neighborhood or town, is making decisions for them. If incentives were put in place to encourage local strategies what one school does may look different than another and in the end, a customized approach that creates results is much better than a blanket policy the is the target of ridicule, aspersions and avoidance.
I am all in favor of improving the quality of food our children consume and I would be the first to say a drastic decline in the prevalence of processed foods would serve everyone. The point of this article is that superficial strategies like banning bake sales serves no one. For the children that are consuming large quantities of sweet, fattening foods they will get it, if not from a bake sale then somewhere else. For families that maintain a more balanced diet and few dollars for a plate of cookies is a win-win.
True leadership evolves at the level at which the issue exists. Each school needs a vibrant, engaged parent body that is willing to examine the situation of their particular school and make appropriate "policies" for each situation. Perhaps asking for a variety of baked goods that include fruit, whole grains and other more wholesome ingredients is a good start. For others it may be including fruits and vegetables in their offering and some schools may find other ways of raising money. By taking leadership out of the hands of those who are living with the issue, we disempower the very people we need to be more engaged with it-the parents.
The solution to the problems we face as a nation will not be found, nor created inside the Beltway. It is important for each person to engage their leadership in their lives and starting by addressing healthy eating habits is a good-and easy place to do it. Let's hope the government encourages leadership and doesn't squelch it.

Kathleen Schafer is at the forefront of leadership development with more than 20 years experience. Grounded in the rough and tumble world of politics, experienced in business, honed in academia and broadened by her own journey to create a balanced life, she brings remarkable insights on how individuals can develop their leadership potential to successfully create productive and fulfilling lives. Kathleen personal presence in one-on-one coaching, seminars, and keynote presentations transforms peoples perspective on what they can accomplish and how to walk it in the real world everyday. Her leadership tools are simple, easy to understand allow you to quickly integrate them into your life, starting now!