Helping the Down Syndrome Community after Hurricane Sandy

This past week we witnessed the storm of the century.  Hurricane Sandy set her sights on the East Coast of the United States and her wrath was felt from Florida to Maine, from New Jersey to Wisconsin and all the states in between.  This storm struck with devastating wind, rain, floods and snow and in doing so, it left millions of people without power, destroyed property and even claimed lives in its aftermath.  

Today as I recover from 3 days without power, some damage to my house and lose of all my food in my refrigerators, I worry and pray for the millions of people who have it far worse than I do.  I know during the storm and after losing power, I needed to relocate my family as it was to cold to keep kids in the house.  Also, Shane and Wyatt need electricity for their apnea monitors and feeding machines, both require continuous feeds through the night.  Just knowing what I had to do, again makes me think of the families who are still struggling.  There are millions of people still without power, families who can not and will not return home due to damage from wind, fire or flood.  There are families who are cold, hungry, out of gas and are really struggling at the moment.

I know the Down syndrome community is a close knit family.  We rally when we have a cause and often come to the aid of those in need.  We need to do this yet again.  I have decided, through the Shane and Wyatt Down Syndrome Foundation, that we will try to assist a few families.  I am hoping that we can provide $50 gift cards so that a family may purchase food, gas or clothing.  I realize that this wont make all things better but maybe will help, even if just a little bit.

I am asking for your help.  Every dollar donated will go to a family that has suffered through this hurricane.  I have made my donation and I hope that this will provide some relief for a couple families.  Please consider doing the same and please feel free to share or email this to your family, friends, business owners, professional athletes or anyone who understands and supports and might be able to help.  I am not setting a goal of how much I would like to collect but I know we are ready to send 2 gift cards with my donation and I hope that we can send 50 or 100 or to every family nominated to receive a gift card.  This is so important.

Please send checks payable to Shane and Wyatt Down Syndrome Foundation, PO Box 214, Lehighton PA  18235 or consider a donation with Paypal to ericwaxy@ptd.net.  

Now, if you would like to add your family to the list or if you would like to nominate a family to receive a gift card, please do so by emailing me at ericwaxy@ptd.net.  I will acknowledge each email.  I will place the family name on an index card and pull a name for each $50 donated.  I will pull the first two names next friday and will mail the cards shortly afterwards.

The rules are simple, a family must have an immediate family member with Down syndrome.  The family must have been in the path and suffered directly from the hurricane.  Please include a brief note on the storm and the impact on your / the family, who is the individual with Down syndrome, mailing address and the preferred grocery store and gas station. 

My family will not benefit from this in any way. I will also post on the Shane and Wyatt Down Syndrome page on Facebook the amount donated and the winners by name only of the families receiving Gift Cards.  I really hope that we can make a difference and with your help, help more then just a few families.

Thank You and God Bless.

Eric 

ericwaxy@ptd.net

Shane and Wyatt Down Syndrome Foundation

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The Waksmunski Family: Shane and Wyatt Down Syndrome Foundation: The Shane and Wyatt Down Syndrome Foundation (SWDSF) is now open for business.  This Foundation will have two primary points of focus.  Th...

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The Shane and Wyatt Down Syndrome Foundation (SWDSF) is now open for business.  This Foundation will have two primary points of focus.  The first will be to recognize those in our schools and communities that are making a difference in the everyday lives of those with Down syndrome or special needs.  The second will be to assist individuals or families, who may not always ask, but who could use  a helping hand.

First, I spend a lot of time advocating for my sons and educating those who may not know of the challenges, struggles, joys and success of having a child (or twins) with Down syndrome or special needs.  With this in mind, SWDSF will establish a scholarship program for high school seniors to be used to continue their education after High School.  This award will go to a senior who has shown leadership while advocating, fundraising or volunteering to help and assist those with special needs.  I hope to establish at least two scholarships in two different High Schools for the class of 2013.  SWDSF will also establish a community award that will go to an individual with Down syndrome or to a sibling of an individual with Down syndrome who has made a significant contribution to the Down syndrome community.  For this award, since I will come out to meet the person and conduct the presentation, we will initially limit this to those living in the Northeastern United States.  I hope one day to be traveling the country delivering this award.  My hope is that nominations would come from the nominee’s friends, family or local Down syndrome group.  This is an opportunity to work together and say thanks to those who are making a difference.

Secondly, SWDSF will establish a program to assist individuals and families in purchasing learning tools, iPads or supplies that will positively impact a person’s life so that this person may reach their full potential as a person.  SWDSF has already secured donations to purchase an iPad that will be delivered next month to a family in PA.  This family also has twin boys with Ds, are non-verbal and have autism.  After notifying their Mom this past weekend and after a few back and forth emails, this was the last email from her that I received:  “Thank you!!!!!!!!!!! And I KNOW this will help the boys unlock what's inside their smart little heads”  I hope so!!  This is why this program is so important.  Hopefully, we will be able to assist many more families as well.  

This Foundation will only work and be successful if we all get involved.  SWDSF will need financial assistance and with your help and through your donations along with fundraising activities, we can make this possible.  I realize that there are many family obligations, financial stresses, other charities and such, but I know we can make a difference and we will, one family at a time.  Also, my goal was not to rival other local Down syndrome groups or organizations to but work with them to recognize those who are making a significant contribution and to develop a program to assist families.

We are planning a Fundraising Dinner / Dance for later this year, more information to follow on this event.  If you are interested in sponsoring an event or hosting a fundraiser, please reach out to me so that we can discuss this in more detail.  

I hope you find what we are doing valuable and beneficial.  Please consider making a donation so that we can really hit the ground running.  Every donation is important, with no amount being to small.  

I am so excited and I know together we can make a difference.  The first iPad is being delivered next month and the first community award will be presented shortly as well.  This is just the beginning!!

Please send donations to:

Shane and Wyatt Down Syndrome Foundation

PO Box 214

Lehighton, PA  18235

My email address is ericwaxy@ptd.net  

Again, THANK YOU!!

Shane and Wyatt Down Syndrome Foundation 

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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