Shane and Wyatt Down Syndrome Foundation: SOCIAL “ANYTHING”GoodDay!! We are wondering h...

Shane and Wyatt Down Syndrome Foundation: SOCIAL “ANYTHING”



GoodDay!!  We are wondering h...: SOCIAL “ANYTHING” Good Day!!   We are wondering how you are all doing and how you are holding up.   We also so that you are heal...

SOCIAL “ANYTHING”

Good Day!!  We are wondering how you are all doing and how you are holding up.  We also so that you are healthy and so are your families.  We also know this is not the case for some of you and we want everyone to know that we have you in our thoughts and prayers.  


This is becoming a more difficult time for both Shane and Wyatt.  Not from a physical health standpoint as both have been reasonably healthy.  But emotionally?  It is starting to take its toll.

When Shane and Wyatt were born, initially we questioned why they were born with Down syndrome.  We questioned why both?  What were the odds of this happening?  Why our family?  Today, we fully understand what a blessing they are, not just for our family but for so many people.  They are also blessed they have each other.  It is the bond they have that has kept them sane over the past few weeks.


From early in their lives, we have kept them as active as possible.  We have never shied away from the public or from including the twins in the community.  I believe this has helped them socialize and become the who they are today.  This is a big part of who they are and what they do.


Now suddenly, SOCIAL DISTANCING.  Who saw this coming?  While we may agree or disagree, we at least know what is happening and why.  Shane and Wyatt do not.  they do not understand why there is no school.  Why they stopped going out, even to the store.  Why no sporting events? Eating out?  It is starting to take its toll on them.


Everyday they ask when they wake, school?  The disappointment when they hear no.  They ask, baseball? Basketball?  Football?  And again disappointment.  Everyday, they dress themselves, pack their backpacks full and pretend they are going somewhere.  Shane especially will go outside and stand there and ……… wait……… look around……… and at times just looks sad.  He walked around the yard the other day for almost an hour like this.  All alone with his thoughts and dreams, I guess.  


They are really missing the social interaction that is such a big part of their sole and who they are.

Zoom and Facetime has helped and hurt.  They LOVE seeing their friends from school, Nana and Pop Pop, Trooper Tony and others but are also extremely frustrated when the calls end.  They do not understand why they just cannot see them in person or why the calls had to end.  We have come to expect the melt down after each call but understand the value and joy during the calls as well. 

We have started posting a #DailyHug photo every day.  We hope you enjoy this, and the responses have been awesome.  Shane and Wyatt have picked some of the photos that are posted, and they remember each person or situation of when the photo was taken.  This brings daily joy to them but also leads them to question why they are not out and about taking new photos instead of looking at the past.  They also are read all the replies and see the GIF’s and photos posted in reply.  We thank you for this.  


Coming back to why were they both born with Down syndrome?  Who knows, we no longer ask why but instead say Thank goodness.  This time would be so hard for them if they were going through this period without a partner.  I know there are many people and kids who are alone and trying to figure this out on their own terms.  I do not know what to say, except that I believe everyone should have a twin.  I know that is not possible.  


For now, we will continue to take this one day at a time.  We will get through this and hopefully we will stay healthy from this virus.  We will continue to think and pray for all of you and for your good health as well.  We will keep posting past hugs until we are out hugging again.

Please stay in touch and keep us in your thoughts and prayers.  We value our social media interaction until we can get back out again.


One last thing ………. DON’T MESS with FOOTBALL SEASON this fall.  We need to get to a bunch of games and if we do, all this staying home stuff will be forgotten.




Hugs,

Shane, Wyatt and the Waksmunski Family.

Shane and Wyatt Down Syndrome Foundation: Daily Hugs from Shane and Wyatt

Shane and Wyatt Down Syndrome Foundation: Daily Hugs from Shane and Wyatt: Daily Hugs Anyone who has ever met or spent time with Shane and Wyatt probably received a hug.   Well, assuming of course they lik...

Daily Hugs from Shane and Wyatt

Daily Hugs

Anyone who has ever met or spent time with Shane and Wyatt probably received a hug.  Well, assuming of course they liked you.  LOL.  Don’t blame me if you weren’t hugged.  Anyway, since the start of the COVID19 stay at home orders, Shane and Wyatt have been home every day.  This is hard for them as they don’t understand why they aren’t going to school and why they aren’t going anywhere.  At times, this is tough on them.


We know that many people follow Shane and Wyatt on twitter at @shaneandwyatt1 and on Facebook at @shaneandwyatt and we try to post uplifting stories about them and their journey through life with Down syndrome.  It is become more difficult now that they are home everyday to post about their travels or events.  So, we have decided that the first post of each day will be a photo of a hug.  We hope that you see the photo and smile.  We hope maybe you see the photo and think about a time when you received a hug from them or from anyone that was heart felt and genuine.  


We have hundreds of photos with many people.  Keep checking the daily post to see when (if) one of your hugs makes the cut.  As I write this, we have posted twice. Both photos had connections to South River NJ, both were with a person we love and have done so much for Shane and Wyatt in supporting them.  We love you Mike DeSantis and Coach Joe Susan and can’t wait to hug you both again soon.


Try to start each day with a smile and of course with a hug.  Until we hug again …. 

Shane and Wyatt Down Syndrome Foundation: Bucknell University & Shane and Wyatt

Shane and Wyatt Down Syndrome Foundation: Bucknell University & Shane and Wyatt: It has been awhile since I posted a blog or wrote anything about Shane and Wyatt.  I keep telling myself I should and at times even thought ...

Bucknell University & Shane and Wyatt

It has been awhile since I posted a blog or wrote anything about Shane and Wyatt.  I keep telling myself I should and at times even thought I would.  After this past weekend, It is time to write again and share some thoughts.

Many of you already know that my family loves Head Coach Joe Susan of the Bucknell Bison.  Joe and I are both from South River NJ and although he is older (slightly), I did go to school with his brothers, Jeff and Doug.  It is easy to understand the relationship that Joe has with me and my family.  After Shane and Wyatt were born and when they were finally healthy enough to attend sporting events, Joe sent me a note and invited us out to Bucknell University to attend a practice or game.  I remember asking for more details and his reply was simple, any day and any time.  Joe stated without question, we are family connected through South River and he meant it. 

Fast forward to today.  It appears to me that my family has grown in numbers and in ways that I never imagined after accepting Joe's invite.  It appears that family now includes so many student athletes, coaches and parents connected through Bucknell athletics.   I never saw this coming but I am so grateful and thankful. 

For Shane and Wyatt, life hasn't always been easy.  They were born 10 weeks early and weighed just 3lbs each.  After birth, we were told that they both had Down syndrome and that was the good news.  We weren't sure if either would live or for how long.  Both had serious GI concerns, Lung problems, Wyatt was missing half his diaphragm were just some of the medical complications and after about 2 years and  hundreds of nights at Janet Weis Children's Hospital,  and having endured 10+ surgeries each - they beat the odds and survived.  Wyatt also earned his nickname of Super Wy after a particular tough surgery when he coded in his Moms arms.  Mary (Mom) started CPR and the response team came, took over and .... well the rest is history.  I could not imagine my life without my boys.

Today, as Shane and Wyatt continue to grow one thing is clear and obvious.  They both love sports.  They have always been around the field and courts watching and playing with their big AWESOME brother Jesse and his teammates.  They love to watch Jesse play, hockey and all sports at Bucknell. 


Each and EVERY time we are on campus, we are all welcomed with open arms.  EVERY student athlete has taken time to say HI, give a high-5 or fist pump.  Many have received hugs in return from the twins who appreciate each moment with them.  Coaches have invited us to games and practices while making their team available to our family in a personal way that means so much to all of us.  Parents have stopped us to say hi or to get a hug from Shane and Wyatt.  We thank all of you who have supported us and the twins. 


I often speak to groups and folks about Acceptance,  Respect and Inclusion for all individuals with Down syndrome.  Joe Susan often speaks to commitment and family.  Bucknell is a combination of all 5 - Acceptance, Respect, Inclusion, Commitment and FAMILY.  You see, we aren't alumni but definitely feel like family.  Thank you Coach Joe for inviting us out a few years ago but you failed to mention how awesome the experience would be.  Thank you to every person who has ever said hi, smile or just waved to us.  Thanks to all who follow Shane and Wyatt on twitter at @swdsf.  We hope that Bucknell never changes from this and we hope that they continue to support all individuals of all ability, both who attend as students or fans.  We hope that every October during Down syndrome Awareness Month is celebrated on campus and at all Patriot League events.  We hope to continue our trips to Lewisburg and hope to see you all again soon.  Thank you Bucknell Family for you love and support and a very special hug to our favorite Coach, Joe Susan.

Shane and Wyatt Down Syndrome Foundation: Shane and Wyatt Down Syndrome Foundation Dinner an...

Shane and Wyatt Down Syndrome Foundation: Shane and Wyatt Down Syndrome Foundation Dinner an...: On March 21, 2015 the SWDSF will be hosting our third dinner and fundraiser at the South River Portuguese Club.  The food, as always, will b...

Shane and Wyatt Down Syndrome Foundation Dinner and Fundraiser

On March 21, 2015 the SWDSF will be hosting our third dinner and fundraiser at the South River Portuguese Club.  The food, as always, will be cater by the Ria Mar Restaurant.  This event is a fundraiser that raises money so that we may continue to provide support and resources to individuals with Down syndrome.  The money also helps us to advocate for issue related not just to Down syndrome but for all causes related to special needs or children that may be hospitalized.  Over this past year, we have continued to purchases iPads and have given 10 to children who needed them, we gave away over 30 4-DVD sets to help children and families learn sign language, we were able to provide a gift to almost 150 kids over the holidays and have support others in various ways.  We continue to advocate and Shane and Wyatt have thrown out first pitches, flipped the coin at football games, been honorary captains and will do even more in 2015.  We will be hosting the first ever Down Syndrome Awareness Day with the Somerset Patriots on June 7th and are working on other events as well. We also have supported Make A Wish, as both Shane and Wyatt are Wish Kids, The Buddy Walk of South Plainfield NJ and The Janet Weis Children's Hospital.

We are only able to do this with your support.  This March 21st, will be our third fundraiser and last year was a super event.  They get bigger each year and are a ton of fun.  Last year we had over 250 people attend and I hope we have even more this year.  Sara Weir, President of the National Down Syndrome Society will be our guest and I promise you will enjoy what she has to say as she speaks to the exciting future for Shane, Wyatt and so many others.  Individuals with Down syndrome are today working in jobs they love, get married, attend college, are self advocates and some even work in Washington DC on such bills like The Able Act.

We not only hope you attend our event in person, but we also need your help with gifts for our raffle. Nearly all the past gifts have been donated to the event.  We are looking for themed gift baskets, tickets to events / shows / sporting events, gift cards, dinners, one of a kind experiences, hotel stays, sign or autographed memorabilia or just about anything.  No donation is to big or to small.  We need your help.  Please consider a donation.

Below is the link to purchase tickets or to make an on line donation.  Individuals with Down syndrome are free.  Come out for a fun time, good food, sangria, dancing, raffle and to meet new or to see old friends.  Please contact me with any questions, to make a donation or to help.

https://www.eventbrite.com/e/shane-and-wyatt-down-syndrome-foundation-dinner-dance-fundraiser-tickets-14953548466

Shane and Wyatt Down Syndrome Foundation: Shane and Wyatt at Bucknell

Shane and Wyatt Down Syndrome Foundation: Shane and Wyatt at Bucknell: It is football season and that means a family trip to Bucknell to cheer on our friend, Head Football Coach Joe Susan and the Bucknell Bis...

Shane and Wyatt at Bucknell

It is football season and that means a family trip to Bucknell to cheer on our friend, Head Football Coach Joe Susan and the Bucknell Bison.  I would like to thank Coach for again having us as his guest and for taking time to visit with us after the game. I know with the team, parents, boosters and recruits that your time is limited and I appreciate all you've done for us. Again, we had a blast and as you can see in the photo, Shane and Wyatt were happy to see you.

To the people who sat near us during the game, I hope the kids weren't to much. You see, my kids like to run around, cheer with the cheerleaders and dance with the band. They also tend to hug anyone willing to hug back and will high-five everyone within reach. At one point, Wyatt sat down right on the steps leading up into the stands, must have decided he had the best view of the field  and refused to move which caused some people to walk around him. I guess they could have stepped on him and I'm glad that wasn't the option taken. So, I hope next year when we arrive you don't see us and think "oh no, please don't sit by us again".  LOL

The highlight of the trip is after the game when we head down onto the field. All three boys ran the field and all three scored at least one game winning TD.  Thank you to all the kids and fathers who included my boys with your kids in a game of catch.  At one point I saw Wyatt about 50 yards away from me running into the end zone wearing a football helmet. I still don't know where he got the helmet but good for him.  A short time after that I saw Cindy Susan, wife of the football coach, playing catch with Shane. AWESOME and thanks again.

I guess I should end by saying, yes Bucknell won the game.  Coach, in case your wondering, I think we are good luck to the program as you never lost when we have been in the stands. Thanks again for a great evening.

GO BISON!!

#shaneandwyatt
#downsyndrome

Buddy Walk on Oct 4th for Down Syndrome Awareness

On Saturday October 4th, Shane and Wyatt will be at the Buddy Walk in South Plainfield NJ to walk and celebrate Down Syndrome awareness. The Buddy Walk was established in 1995 by the National Down Syndrome Society to celebrate Down Syndrome Awareness Month in October and to promote acceptance and inclusion of people with Down syndrome.

We have set a team goal of $2,500 for this walk in support of NDSS. I am asking that you support us next Saturday by walking with us if you are available to do so. You can also support Team Shane and Wyatt by making a donation and help us reach our goal.

Please use this link http://ds.donordrive.com/index.cfm?fuseaction=donorDrive.team&teamID=5876 to make a donation and help support the NDSS, Shane & Wyatt and all individuals with Down syndrome.

This walk is so important to our family and I appreciate you taking the time to read this and I do hope that you consider support our time and help us reach our goal. Thank you for your support.

This is EXCITING!!! TWO exciting GIVEAWAYS from Shane and Wyatt Down Syndrome Foundation

When I started Shane and Wyatt Down Syndrome Foundation (SWDSF), I had two main objectives.  The first was to help families and individuals with Down syndrome and the second was to advocate for Down syndrome Awareness.

You may or may not know, October is National Down syndrome Awareness month.  I wanted to do something special that both helped individuals or families and also advocated for Down syndrome.  I believe, the SWDSF has put together two very exciting programs for October that accomplish both.

First, we have partnered with Baby Signing Time - Two Little Hands and SWDSF will be giving away a Baby Signing Time DVD/CD Combo Bundle (valued $69.95) to one family each day throughout the month of October. This package is a great first step into signing and was created specifically for babies as young as 3 months old up to 3 years old.  This is a 4 DVD/CD set and contains the first 4 volumes in the collection.  Click Here to learn more about this combo bundle and what is included, SWDSF Giveaway.

I am so excited!! This is the exact same bundle that I bought for Shane and Wyatt.  Our family still uses it and this has helped all of us to learn sign language.  Shane and Wyatt, now 3 1/2 years old, still do not speak but do communicate to us through signing.  I wish I had purchased and started using this when they were months old.  I believe in this product and know that it works and will help your child and your family.

This giveaway is for any individual with Down syndrome that hasn't yet learned to sign but needs to.  You can start showing and kids have started to sign as early as 3 months old.  You may register for this giveaway at Register for Giveaway.  Good Luck!!  Please share with a family that could use this.  Increase your chances and ask the family, grandparents, aunts and uncles to register as well.  Register today!

Second, I wanted to put together a program that advocates for individuals with Down syndrome.  SWDSF has purchased 31 of the Just Like You Down Syndrome DVDs.  I will send a copy of this DVD for free to any school, hospital or library in NJ or PA.  I want to make sure in order to receive a copy, the institution wants the DVD and will use it.  I know some of you are teachers, doctors and librarians or have family members that are.  Maybe you have contacts that are.  This giveaway is simple, Please send an email to swdsfoundation@gmail.com.  Please include the contact person, name of the institution, mailing address and a note as to why they want it or what they will do with it.  From the emails, I will select 31 and will send them off.  This has the potential to impact thousands of people.  This past May, our family had the opportunity to show this DVD to Jesse's entire school and I also did a presentation on Down syndrome which included Q/A from the students.  Jesse was so excited to bring Shane and Wyatt to school that day and we had so much fun.  We can do the same for your school as well.

I hope that you find what we are doing as exciting as I do.  I wanted to do something special this year, something that both helped individuals and advocated for Down syndrome.  Please share this with your friends and family and as always, thank you for your support.

SWDSF is also currently working on our official non-profit status and we are working to create our website.  This is taking longer then expected and hopefully we will have both completed soon.

If you have any questions for comments, please feel free to contact me at ericwaxy@ptd.net. If you received this by email and no longer wish to receive an email of my blog or from SWDSF, let me know and I will remove your address.  If you would like to be added, let me know.

Thanks again,
Eric
Shane and Wyatt Down Syndrome Foundation
PO Box 214
Lehighton, PA  18235

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

Shane and Wyatt Down Syndrome Foundation: Please consider a donation to the Shane and Wyatt Down Syndrome Foundation.
SWDSF will have two primary points of focus. The first will be to recognize individuals in our

The Waksmunski Family: Shane and Wyatt Down Syndrome Foundation

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...

The Waksmunski Family: Shane and Wyatt Down Syndrome Foundation

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...

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.  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 

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...

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