The Bill & Melinda Gates Foundation has given $7 million to benefit women across the province.
Researchers working at the Child & Family Research Institute will use the funds to test new strategies for the monitoring, prevention, and treatment of pre-eclampsia, a medical condition in which high blod pressure arises in pregnancy.
“Hypertensive disorders, or high blood pressure, complicate five to 10 percent of pregnancies and can lead to serious maternal and fetal illness or death. Pre-eclampsia, the most serious of these disorders, is the second leading cause of maternal death worldwide, resulting in up to 76,000 maternal deaths each year,” UBC said in a news release today.
Battles are about how you live, not how you die, says Patrick Sullivan.
He has lived by this mantra ever since his youngest child, Finn, died from a rare form of childhood cancer in October 2008. Finn was three.
This morning Second Cup here at the hospital was generous enough to provide us with coffee and muffins to hand out – for free – to help us kick off Miracle Weekend!
I should note that they gave us real estate to do this right in front of their store – which undoubtedly affected their sales. Now that is a gift.
It gave us a great opportunity to let families, caregivers and staff of the hospital know what will be going on here this weekend! This will be the third year we’ve had the Miracle Weekend broadcast on the Children’s Hospital site. For years it had been a dream of our producer, Jayne Akizuki, to bring the show to our site, and I can see why. Having the show on site brings everything together. Our patients and families, the reason that we do this, are right there to cheer on our donors and volunteers, even if it’s from their room.
I think I can speak on behalf of all of my colleagues when I say that having the hospital in my line of site all weekend is an inspiring reminder of the importance of this show.
The money raised for Miracle Weekend supports the hospital’s most urgent needs. This could be equipment, research or education and leadership programs. You would be astounded by the cost of some of the equipment here. And, because children are not like adults, we need equipment in a variety of sizes. For example, we need a blood pressure cuff that will fit a newborn baby, another one to fit a big 16 year old boy, and then more to fit all the sizes in between.
It’s going to be an amazing weekend and I will update you throughout.
In the meantime, if you want to learn more about Miracle Weekend, please visit the website at www.miracleweekend.com.
The Global trucks have arrived and have begun the process of turning our lobby at the Child And Family Research Institute into a live TV set!
Are you going to be ready to watch the show? Mark your calendars; we are live on Global BC from 7:00pm – 11:00pm on Saturday night, and 10:00am – 6:00pm on Sunday! You don’t want to miss it.
In this issue we look at how children and teens with chronic illness and disability are affected by innovations in treatment and the very real changes it has on their lives.
One of the often overlooked developments in recent years is that, even though many pediatric diseases are reducing in frequency, the intensity of illness is increasing. BC Children’s Hospital expects that in the near future the vast majority of beds will be occupied by children with chronic and increasingly complex conditions.
The good news is that as a result of medical breakthroughs – many of which are funded through donor support – we are finding new and better ways to treat some of these conditions; conditions that steal the quality of life from our most vibrant members of society.
As a result of these tremendous innovations, children and young adults with significant health problems are living longer and stronger lives than they were ever able to in the past.
In this issue we see how new technologies in the form of minimally invasive surgery helped one young lady – our cover girl – stand straight after living with a spine bent by scoliosis. Another story is about a young athlete who is set free from a lifetime of medication with a simple, yet groundbreaking procedure. Our third story is about a young girl being equipped with a device to help her breath on her own – the first time since she was paralyzed in a car accident.
These are stories about the innovations our doctors and researchers work toward every day – and what happens to the young people who benefit from those breakthroughs.
Read the Spring issue of Speaking of Children here, and let us know what you think!
Rare Disease Day (Sunday, February 28) is fast approaching and organizers want to do one thing: raise awareness of rare diseases and of their impact on the lives of those suffering from them.
A disease is considered rare if it affects fewer than one in 2000 people. Current estimates say there are about 7000 rare diseases in existence and since many of them are poorly understood there is a sense of isolation amongst the sufferers.
Researchers at BC Children’s Hospital have found that studying rare disease is not without broader benefits: research can reveal previously unknown biological pathways. Research is the brightest hope that sufferers have, so show your support by getting involved.
Dr. Cornelius Boerkoel is a Senior Clinician Scientist at the Child & Family Research Institute, working on defining the cause of and potential therapies for inherited human diseases.
His research investigates the genetics behind rare diseases and he is an international expert on Schimke immuno-osseous dysplsia (SIOD), a rare and fatal form of dwarfism.
Dr. Boerkoel has found that the complications of SIOD are similar to conditions seen in the general population such as stroke, kidney failure and immunodeficiency. His research is relevant to finding a better understanding of the genetic pathways that underlie this common health problems.
Part of Dr. Boerkoel’s work is funded by the Rare Disease Foundation which was established in February 2009 and whose goal is to change the lives of children and families affected by rare and undiagnosed diseases through social support, advocacy and treatment-focused research.
For more information, please visit the Rare Disease Foundation page.
According to Health Canada more than 50 per cent of newly launched medications have serious adverse drug reactions that show up in the post-marketing setting. Even more alarming, three-quarters of medications currently out on the market have not been tested in children.
Each year thousands of children are admitted to emergency departments across the country. Some of these reactions are mild and children are able to go home quickly – but others can have devastating effects.
Clearly, drug reactions are more common than many people think. Would you know what to do if someone had an adverse reaction?
Here are answers to commonly asked questions about adverse drug reactions.
Who Can Report an Adverse Reaction?
Anyone — including consumers, patients, caregivers, physicians, pharmacists, nurses, and dentists can report an adverse reaction to drugs or health products on the Canadian market.
Reporting is voluntary for the general population, but is mandatory for Market Authorization Holders (MAH) as required by Canada’s Food and Drugs Act.
What to Report?
You do not have to be certain that a health product caused the reaction in order to report it. Adverse reaction reports are, for the most part, only suspected associations. Health Canada wants to know about all suspected adverse reactions, but especially if they are:
- unexpected (not consistent with product information or labelling), regardless of their severity;
- serious, whether expected or not; or
- related to a health product that has been on the market less than 5 years.
You should report an adverse reaction soon after the reaction occurred, even if you are not certain that a particular health product was the cause.
Why Report an Adverse Reaction?
All marketed drugs and health products have benefits and risks. Although health products are carefully tested before they are licensed in Canada, some adverse reactions may become evident only after a product is in use by the general population.
Your report may contribute to:
- the identification of previously unrecognized rare, or serious adverse reactions;
- changes in product safety information or other regulatory actions such as the withdrawal of a product from the Canadian market;
- international data regarding benefits, risks or effectiveness of drugs and health products; and
- health product safety that benefits all Canadians.
For more information, visit the Adverse Drug Reaction reporting page.