Wednesday, March 7, 2012
The Waksmunski Family: "Words Do Matter"
The Waksmunski Family: "Words Do Matter": It was almost one year ago when I wrote the blog “I was Tested …. and Failed”. I was on a business trip in Toronto and while engaged in co...
Wednesday, February 22, 2012
The Waksmunski Family: $20 Million - Really??
The Waksmunski Family: $20 Million - Really??: The National Institutes of Health (NIH) has stated that $20 Million was spent in 2011 on research funding for Down syndrome. WOW, Thank yo...
$20 Million - Really??
The National Institutes of Health (NIH) has stated that $20 Million was spent in 2011 on research funding for Down syndrome. WOW, Thank you!! Again, that was $20 million in research funding for Down syndrome. That is a lot of money, right? Hmmm, maybe not.
The total budget, as released by NIH, in 2011 was $31 billion. That’s correct, $31 billion. The $20 million in funding for Down syndrome is less than 1% of the budget for NIH in 2011. Down syndrome is the most common genetic disorder caused by a chromosomal abnormality yet it is the least funded genetic condition funded by the NIH. Shane and Wyatt will be 2 years old next month and our medical costs are closing in on $4 million. Wow, $20 million in research funding? People with Down syndrome have an increased risk of developing a number of medically significant problems; respiratory infections, gastrointestinal track obstructions, heart defects, hearing loss, hypothyroidism, eye abnormalities, childhood leukemia, and Alzheimer’s. They also exhibit intellectual disabilities, in some cases severe; children with Down syndrome usually develop more slowly than their peers and have trouble learning to walk and talk. Research funding is important and needed.
There have been breakthroughs in research as an individual with Down syndrome born today has a much longer life expectancy than 20 years ago. Today about half will live 50 years or longer. Physical and speech therapy has improved and along with screening for common medical problems associated with Down syndrome followed by corrective surgery can often improve the quality of life.
With that being said, so much is not known or is being currently researched. What causes the extra copy of chromosome 21? Having an extra copy of chromosome 21 results in more protein being produced and research is currently underway to better understand this process. This research could lead to improvements in cognation for individuals with Down syndrome.
$20 Million? In the United States there are approximately 400,000 individuals with Down syndrome. That means the NIH will spend $50 per person on research. Since 2000, research funding for Down syndrome has plummeted. This means $100 in research funding for my boys will be spent to hopefully better their lives and cognitive skills. Hmmm, that $20 million doesn’t sound like so much money anymore and less than 1%, actually 0.6% sounds worse.
The Shane and Wyatt’s Down Syndrome Foundation, while grateful for the funding that is currently available for research, is disappointed that the National Institutes of Health has continued to decrease funding in the area. We will support the National Down Syndrome Congress, National Down Syndrome Society, Global Down Syndrome Foundation and the Down syndrome community who will continue to fight for increased funding for research that will benefit the lives of individuals with Down syndrome.
ericwaxy@ptd.net
Wednesday, October 19, 2011
The Waksmunski Family: I am going to Change the World
The Waksmunski Family: I am going to Change the World: I thought that I would share a conversation that I just had with my 4 year old, Jesse. This conversation took place literally minutes ago, ...
I am going to Change the World
I thought that I would share a conversation that I just had with my 4 year old, Jesse.
This conversation took place literally minutes ago, few minutes past midnight. I thought I heard him still awake in his room and thought I would go in to check on him. As I walk in he sits up and looks at me.
Me – “hey buddy, are you OK?”
Jesse – “yes, are you OK?”
Me – ‘I am, does your stomach hurt?”
Jesse – “no, does your stomach hurt?”
Me – “No, why are you awake? Can’t you fall asleep?”
Jesse – “No Papa, I can’t fall asleep. I am having a hard time.”
Me – “Why? What’s wrong?”
Jesse – “I am thinking about how I am going to change the world”
Me – “How do you think you will do that?”
Jesse – “With my super powers and I don’t think it is working”
Me – “Don’t worry buddy, one day you will change the world”
Jesse – “Really?”
With that he put his head down on his pillow as says “Oh good”
“Good Night Papa”
“Good Night Buddy”
Saturday, October 8, 2011
The Waksmunski Family: "Words Do Matter"
The Waksmunski Family: "Words Do Matter": It was almost one year ago when I wrote the blog “I was Tested …. and Failed”. I was on a business trip in Toronto and while engaged in co...
"Words Do Matter"
It was almost one year ago when I wrote the blog “I was Tested …. and Failed”. I was on a business trip in Toronto and while engaged in conversation with another traveler, I heard him say the word “retard”. I was disappointed with myself because I didn’t say or do anything. I promised myself afterwards that I would never allow this to happen again.
Since then, when I hear the R-Word, I speak up. I have had the opportunity to speak with co-workers, friends, called a radio station after hearing the word on air and even called a MLB Baseball team after hearing a ballplayer use the word. If you say it and I hear it, I am going to say something. This vow that I made to eliminate the word also brought me to a one on one meeting with PA House of Representative Doyle Heffley earlier this year. I believed, and still do, that the langue in PA of MHMR, Mental Health and Mental Retardation, needed to be changed. I wanted Representative Heffley to know that while we needed and appreciated the services that the state provided for both Shane and Wyatt, I was having a difficult time with the R-Word being included with the services provided.
This morning, I received a letter from Representative Heffley informing me that he was wholeheartedly supporting PA Senate Bill 458, which amends the Public Health and Welfare Act to change the wording of mental retardation to intellectual disability. This bill unanimously passed in the Human Services Committee meeting on Wednesday, October 5th and is expect to move right along. I am thrilled that this word will no longer be included in the name of the department that provides services to my boys and to so many others.
I would like to personally thank Senator Dinniman for introducing this bill and Representative Doyle Heffley for not only remembering Shane and Wyatt but for taking the time to meet with me and for supporting this bill.
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