http://princeliamthebrave.blogspot.com
Liam Witt is the bravest person I've NEVER met. His parents are former colleagues of mine, and Larry is the only one of the three with whom I have spoken. Since February of 2007, Prince Liam has been battling neuroblastoma. I have been following his progress for the past two years, and though I know him only from photos and his parents blog, I celebrate his good times and I am saddened by his bad times. His story touches me everytime I sit down at my computer.
Today he is in surgery, as he suffered a relapse in mid-June. I cannot begin to understand how his parents must be feeling at this point, but I am writing this to ask that everyone out there remembers the Witt family in your thoughts and prayers.
I would also ask that the generous amongst you pay a visit to www.cookiesforkidscancer.org. Gretchen, Liam's mother, founded the charity to help raise funds for pediatric cancer research, as it is severely underfunded. It started out as an idea to help raise money during the holiday season, but they will turning 1 this September. The cookies they sell are fabulous, but you can also show your support by hosting a bake sale. I was able to raise a few hundred dollars, but with the help of other like-minded folks, I believe we can do better than that. I am trying to spread the word about their charity, because I believe Prince Liam and other children like him deserve every shot at life that they can get.
30 July 2009
26 July 2009
Everyday, I look around and see a commercial for Autism. Or for Cerebal Palsy. Or some Irritable Bowel Syndrome. Do you know the last time I saw an ad to bring awareness to the public regarding Down syndrome? Never. I am not saying they don't exist, but rather they are not at the forefront of our attention. Which, in my opinion, is an issue for our population who happen to have Down syndrome.
I believe a portion of the issue is that the Down syndrome population is so fragmented. There are currently ~400,000 individuals with Down syndrome living in the United States. There are three (or four) national organizations representing these individuals, and a host of local Down syndrome associations representing them in their communities. However, we do not have one voice when it comes time to approach the NIH for research funding, nor do we have one voice when it comes to fundraising for our own research objectives.
There is no central organization to lobby for funds. There is no central "mouthpiece" to coordinate public relations. There is no concerted effort to re-educate and re-arm clinicians with the proper tools to adequately prepare potential new parents on how to handle a child with Down syndrome. This is a major disservice to our own children, and the children for the forseeable future. We can continue to fight and struggle as a fragmented population, and we can bring change. But it will be small, and it will go unnoticed.
Clinicians will continue to recommend abortion, and misinformed potential parents will continue to take the advice of said clinicians. Individuals with Ds will continue to be excluded from clinical trials and mainstream medical research. And we will continue to battle for research on something other than prenatal diagnosis. In my opinion. to no avail.
I believe a portion of the issue is that the Down syndrome population is so fragmented. There are currently ~400,000 individuals with Down syndrome living in the United States. There are three (or four) national organizations representing these individuals, and a host of local Down syndrome associations representing them in their communities. However, we do not have one voice when it comes time to approach the NIH for research funding, nor do we have one voice when it comes to fundraising for our own research objectives.
There is no central organization to lobby for funds. There is no central "mouthpiece" to coordinate public relations. There is no concerted effort to re-educate and re-arm clinicians with the proper tools to adequately prepare potential new parents on how to handle a child with Down syndrome. This is a major disservice to our own children, and the children for the forseeable future. We can continue to fight and struggle as a fragmented population, and we can bring change. But it will be small, and it will go unnoticed.
Clinicians will continue to recommend abortion, and misinformed potential parents will continue to take the advice of said clinicians. Individuals with Ds will continue to be excluded from clinical trials and mainstream medical research. And we will continue to battle for research on something other than prenatal diagnosis. In my opinion. to no avail.
21 July 2009
In February of this year, the ABLE Act of 2009 was introduced to Congress. For those interested, you can track it down as S.493 (Senate) and H.R.1205 (House of Representatives). For those who do not wish to wade through the legalese, I'll provide a brief synopsis.
Basically, the ABLE Act would create a tax free savings account for those with disability. The funds would be used to provide for things like housing, medical care, education, transportation, and employment support. There are limits to annual contributions and additional funds cannot be added after the beneficiary reaches age 65. The best part (in my opinion) is that the funds do disqualify the beneficiary from receiving other government funding (Medicaid, SSDI, etc.)
I don't often say nice things about the government in general, but it is refreshing to see something like this making its way through Congress. At present, it has been referred to the House Ways and Means Committee and the House Energy and Commerce Committee. as well as the Senate Finance Committee. I will be waiting anxiously to see if this passes, as it provides financial security to those who need it most.
If anyone would like to read the legislation in its entirety, it can be viewed at the following link:
http://www.govtrack.us/congress/billtext.xpd?bill=s111-493
Basically, the ABLE Act would create a tax free savings account for those with disability. The funds would be used to provide for things like housing, medical care, education, transportation, and employment support. There are limits to annual contributions and additional funds cannot be added after the beneficiary reaches age 65. The best part (in my opinion) is that the funds do disqualify the beneficiary from receiving other government funding (Medicaid, SSDI, etc.)
I don't often say nice things about the government in general, but it is refreshing to see something like this making its way through Congress. At present, it has been referred to the House Ways and Means Committee and the House Energy and Commerce Committee. as well as the Senate Finance Committee. I will be waiting anxiously to see if this passes, as it provides financial security to those who need it most.
If anyone would like to read the legislation in its entirety, it can be viewed at the following link:
http://www.govtrack.us/congress/billtext.xpd?bill=s111-493
17 July 2009
Welcome to the first official post of my blog. I will not make any sort of promises or random predictions about the frequency or quality of my posts. The only thing I will guarantee is that I WILL post SOMETHING SOMETIME. Nothing more, nothing less.
So it begins.....Regardless, on to my ponderings. This past weekend, I had the opportunity to attend a research and awareness conference in Cincinnati, Ohio. One of the topics covered during the weekend was future planning. Suprisingly, our government has made that one a bit more challenging for those of us who happen to have the "enhanced" models running around underfoot. Up until this point, I always assumed I'd tuck some money away, take out a life insurance policy, grow old, die and leave my kid some money. Survey says: WRONG.
Because my son has Down syndrome and has/will receive some sort of governmental aid in his lifetime, any inheritance/savings, etc. becomes fair game for the good ol' boys. Based on my understanding, the only way to protect anything I leave to my monkey is to set up a special needs trust. Anything contributed to the TRUST of the monkey is untouchable by our greedy old uncle. This is the balliwack of a lawyer, and it's not something you can do with Word, a bottle of wine, and thirty minutes of down time. However, in order to secure the future of your mini-me, I'd recommend getting in touch with your friendly local legal counsel and making things all official like. I'm doing it now.
And while you're at it, remind mom, dad, grandma, grandpa, cousin earl, aunt buelah and cousin tillie to update any policies, wills or checks they'd like to give your crumbsnatcher. Everything goes to the TRUST of Sunny Bubba Junebug Johnson Jr. Otherwise, it goes to the politicos, and we don't want that.
See, it wasn't all that painful. We'll see if it goes uphill or downhill from here.
So it begins.....Regardless, on to my ponderings. This past weekend, I had the opportunity to attend a research and awareness conference in Cincinnati, Ohio. One of the topics covered during the weekend was future planning. Suprisingly, our government has made that one a bit more challenging for those of us who happen to have the "enhanced" models running around underfoot. Up until this point, I always assumed I'd tuck some money away, take out a life insurance policy, grow old, die and leave my kid some money. Survey says: WRONG.
Because my son has Down syndrome and has/will receive some sort of governmental aid in his lifetime, any inheritance/savings, etc. becomes fair game for the good ol' boys. Based on my understanding, the only way to protect anything I leave to my monkey is to set up a special needs trust. Anything contributed to the TRUST of the monkey is untouchable by our greedy old uncle. This is the balliwack of a lawyer, and it's not something you can do with Word, a bottle of wine, and thirty minutes of down time. However, in order to secure the future of your mini-me, I'd recommend getting in touch with your friendly local legal counsel and making things all official like. I'm doing it now.
And while you're at it, remind mom, dad, grandma, grandpa, cousin earl, aunt buelah and cousin tillie to update any policies, wills or checks they'd like to give your crumbsnatcher. Everything goes to the TRUST of Sunny Bubba Junebug Johnson Jr. Otherwise, it goes to the politicos, and we don't want that.
See, it wasn't all that painful. We'll see if it goes uphill or downhill from here.
Subscribe to:
Posts (Atom)
