Sometimes dogs are the best medicine, for bone pain.
2:32 a.m. That’s the time of night (or super early morning) that Billy wakes up. I hope it’s a bad dream from too much Scooby-Doo. I listen to the monitor for a minute or two to see if he’ll fall back to sleep. I count on my fingers – January, February, March. Not long enough. I was really hoping we’d get to June before he needs more pain medicine for his bones (by IV infusion, about 5 hours). I plod down the stairs to his room and offer him some water. He quiets. I trip back up the stairs and try ...
The View From This Side…
In all honesty, I never once imagined that I would ever be on this side. I like to live life on the edge -- defying the odds. I'm a bit of a control freak, but just a bit -- maybe. When our world came to a sudden halt four years ago, with the early birth of our son and soon later with a devastating diagnosis, it was as if I'd been pushed off that edge that I once craved and was now looking back up, wishing to stand on the mountain high once again. Little did I know that in 3 ...
Pepsi Refresh Ideas that Help Kids with Rare Diseases.
We are crowdsourcing ideas from the Pepsi Refresh ideas campaign. If you know of a pending idea that benefits kids with rare disease, please post the url on the wall of the Children's Rare Disease Network Facebook page so that we can add it to the Pepsi Refresh tab. Vote here as often as possible.
Parents helping kids and kids helping parents, a meet in the middle.
I just returned from a meeting in Europe and one of the best things about these meetings is hearing stories of families, listening to experiences, and learning about those special times when a child’s insight makes us stop in our tracks. It is not about criticism or what is wrong, right, or in between. It is just about those times when we find our hearts’ making a recording that we will remember all the days of our life. One mom talked about all the things she was doing for her son. She described a pretty time consuming schedule that included supplements, ...
Quality of Life and the CLASS Act
A special thanks to all of you who responded to my first post on the CRDN Advocacy/Policy blog. I heard some incredibly heartbreaking stories this week, including one about a boy who passed away on his 6th birthday from complications of three different genetic disorders. That little boy had a compromised immune system and scarred lungs, and also respiratory syncytial virus (RSV). A vaccine was available which may have helped... However, the vaccine has not been tested on older children or children with weakened immune systems, and so it is only offered to children under the age of 3 years ...
News
Malaria-free mosquitoes created
Malaria is caused by a parasite called Plasmodium, which is transmitted via the...
Pfizer’s Viagra Faces FDA Review for Use in Children With Lung ConditionBy Shannon Pettypiece and Molly Peterson – Jul 27, 2010 A form of Pfizer Inc.’s...
NIH Takes On New Role in Fight Against Rare DiseasesJuly 24, 2010 By AMY DOCKSER MARCUS A government program focusing on rare diseases...
Disability Pride Parade, a video.
Caught this video on Saturday in Chicago at the Disability Pride Parade, http://www.youtube.com/watch?v=-EBR_CJz6EU. Just...
First unified protocol to provide primary care to rare disease patients introduced in Spain
In the European Union, a disease or disorder is defined as rare in Europe when it...
Read More Posts From This CategoryFamily Life
Be the Change in MNIt seems as if I have been asked the question, “What do you do?” a lot...
The Tour de France and Testicular CancerWe tend to focus a lot on rare genetic disorders, and with good reason as most of...
Wanting What Others Got…
The other day I attended an absolutely beautiful baby shower for a friend who...
Getting a prompt response in MNI was reminded this week of the extreme importance of a prompt response regarding...
Organ Donors, Thalassemia, and AppropriationsGreetings readers! Sorry it has been a while since my last post. Let’s see, what...
Read More Posts From This CategoryAdvocacy/Policy
The Tour de France and Testicular Cancer
We tend to focus a lot on rare genetic disorders, and with good reason as most of the 7,000 rare diseases are genetic disorders affecting children (75% of rare diseases affect children and 30% of rare disease patients die before the age of five). However, I want to talk with you today about another type of rare disease because it came to my attention... [Read more of this review]
Organ Donors, Thalassemia, and Appropriations
Greetings readers! Sorry it has been a while since my last post. Let’s see, what have we missed? Hope everyone had a fantastic July 4 weekend! Since my last I last saw all of you we had the holiday, and I spent some time in New York City. During the New York trip I checked out the exhibit “As Within, So Without” at the Lyons Wier Gallery, of which... [Read more of this review]
FDA and Rare Disease Drug Development, from FDA Week
June 29, 2010 // [FDA Week, http://insidehealthpolicy.com/] FDA is currently in the middle of a flurry of activity aimed at better focusing its regulation of rare disease treatments, but the agency disappointed some outside advocates by delaying the possibility of creating a special rare disease review division within FDA for at least a year. That news... [Read more of this review]
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