Wish Upon an iPad

We all have wishlists. Commonly, it revolves around what we wish to receive or have - new shoes, a massage, an iPad, etc. I have such a list. I also have another wishlist - one that might seem more like a to-do list, in a way. I wish to contribute to society, to make a good difference in the community.

In April, when I first learned about the Down Syndrome Research and Treatment Foundation's (DSRTF) fundraising contest for their +15 campaign via email, I knew right away that I wanted to do it. I had attended the Dr. William Mobley's presentation at our local Down Syndrome Association annual conference last year. He is one of the researchers whom the DSRTF supports. I was awed and highly interested in his research findings - the continued progress from hypothesis to lab experimentation to very probable treatments - for preventing the early onset of dementia and improving learning for people with Down syndrome.

The top fundraiser would win an Apple iPad - one of today's most coveted gadgets, especially within the special needs community. I told Bill I wanted to win the iPad, not for us, but to donate to Matthew's preschool. I just thought, "What a great opportunity to raise money for Down syndrome cognition research and potentially help other kids!"

After a brief, informal meeting with Matthew's speech & language therapist, we determined that an iPad would certainly be an asset for the Early Childhood Special Education program. Many preschoolers with special needs such as Autism, speech and language delays, and developmental delays, who can use the iPad's touch screen, can benefit from using certain iPad apps. We've seen it in the news.

"Parents turn to iPad apps for children's therapy"
"iPad apps help developmentally disabled N.J. students learn"
"iPad Apps That Help Autistic Children's Development"
"EDUCATION MATTERS: Schools using iPads to help autistic students"
"iPad therapy helps children with special needs 6/17/2011"
"How devices like the iPad are helping special needs children, hospital patients"
"Dublin Schools Using iPad As Educational Tool"

I've seen it first-hand with how Matthew independently navigates my iPhone (we haven't saved for an iPad yet) and how much he's learning. He looks for the apps I downloaded for him. He can practice speech sounds with SmallTalk Phonemes. He reviews his letters, colors, and shapes with Preschool Prep's "Meet the ___" series apps. He hears his words back with Talking Hippo or Talking Roby. He learns more sight words with various sight word apps. He builds his vocabulary with various kindergarten.com apps.

With help from family and friends, we started fundraising in April. The deadline was June 21, 2011. 3 garage sales, 1 month of selling pretzels, and several generous individual donations later, we raised $2,211.

Six hours ago, I received an email from the DSRTF informing me that we (Bill and Ria) were the top fundraisers. We were getting the iPad. Wow! I couldn't believe it. I was ecstatic! I had never done anything like this before.

We raised money and awareness for Down syndrome cognition research that will benefit thousands of people living with Down syndrome. Matthew's preschool will get the iPad, which will benefit more kids with special needs.

We owe many people many thanks. Bill and I would not have been able to do this on our own. Added on my to-do list: write iThank You letters to everyone who put in long hours preparing for the garage sale, worked during the sale, took care of the kids while I was busy at the garage sale, sponsored prizes for the garage sale raffle, donated on our fundraising page, bought pretzels, and wished us well.

I got my wish.

Related posts:
Supporting Cognition Research via plus15
2-Day Garage Sale Benefit For Down Syndrome Research

2-Day Garage Sale Benefit for Down Syndrome Research

We had a successful 2-day garage sale benefit on May 14 & 15, Saturday & Sunday. We are truly humbled and thankful for the outpouring of support from everyone who offered helpful suggestions and ideas, took time out of their day to help, donated, and made the event possible and successful. This is part of our efforts to raise funds for the Down Syndrome Research and Treatment Foundation's (DSRTF) +15 campaign.

The DSRTF is a national non-profit organization that funds important biomedical research projects around the country. These research projects are focused on developing treatments that would improve cognition and prevent the early onset of Alzheimer's for thousands of individuals with Down syndrome. I love how they don't prioritize prenatal diagnostic-type of research unlike the National Institutes of Health (NIH), who directs majority of federal funding (what little is allocated for Down syndrome) toward prenatal testing for Down syndrome.

The National Down Syndrome Society (NDSS) cites that "25% or more of individuals with Down syndrome over age 35 show clinical signs and symptoms of Alzheimer's-type dementia. In the general population, Alzheimer's disease does not usually develop before age 50."

I don't know what the future holds for Matthew. I know that I will be 65 years old when he turns 35. I know I would be very sad if he develops Alzheimer's early and lessens his ability to live independently, especially since it may take more work and time for him to achieve independence. If that was the case, he would've worked so hard at something only to enjoy it for a fleeting moment. I know that's probably excaggerating and worrying myself for no reason but as his mother, it's my job to worry, isn't it? If he happens to be 1 in the 25% estimated individuals who develops Alzheimer's early, it would be nice to have some research to know if it is preventable and if so, how to prevent it.

50 PERCENT CHANCE OF SUN?
The sun never appeared and it drizzled and misted all day, both days. But despite the rain and cold (high 50's to 60's), we had a relatively great turnout and raised a total of $686.45 selling kids' clothes, food, books, and toys. YAY!! This catapulted us to achieving 25% of our $5,000 goal.

THE PROCESS
The two weeks leading up to the garage sale weekend were hectic for everyone involved.

I took care of flyers, garage sale signs, donations for the raffle, the garage sale ad in the newspaper and craigslist, tagged some items, and put up garage sale signs at both entrances to our subdivision. I would've put up more if there was enough time and if I didn't have the kids with me. I made sure the newspaper ad had a line "Benefit for Down syndrome."

My wonderful sister-in-law took care of presorting all 30+ big bags of clothes and pricing the items individually. She helped me get the word out on facebook. She made some yummy Thai sticky rice (the recipe is in her cookbook "Introduction to Asian Cooking" by Kristin Enkvetchakul, published in 2006). She and her husband let us borrow their awesome commercial-grade hotdog machine.

Bill shuttled the boxes of clothes and other supplies from her house to ours and we set it all up in our garage the night before. If I were smarter, I would've started setting everything up in the garage 2 or 3 nights before. I also baked chocolate crinkles the night before. We ended up going to bed at 2am. Then I got up at 5am to straighten whatever I could before we opened at 7am.

Saturday was very busy and I was thankful to have wonderful friends and family to help. We were on our feet all day. I didn't even have time to take pictures during the sale so I took pictures after everyone had left.

Most of the people whom we didn't know personally found our ad in the newspaper. One couple found my ad on craigslist and came specifically because I had advertised it as a benefit for Down syndrome. They lived in a neighboring city and have a daughter with Down syndrome. It was wonderful to make yet another DS connection.

On another note, my thoughtful nephew made this sign to put on the door to the kitchen. It says, "Employees only."

WHAT'S THIS ABOUT PRIZES?
I had a radical idea to offer prizes at our garage sale. Shoppers are issued a raffle ticket for every $5 spent. It actually helped encourage most people to either buy more or donate what would've been their change. We also had a few friends come to donate but not buy anything. 2 raffle tickets were issued for every $5 donated (without a purchase).

There were 10 prize buckets to choose from. The most popular one was for movie tickets, followed by restaurant gift certificates. I am extremely thankful for the prizes that were donated by generous business owners and friends in the area.

Matthew drew the winners at the end of day 2 of the garage sale. It was the best random way to pick winners and a great way to practice some functional math skills, i.e. I'd ask him to give me one ticket only from each little tub. If he gave me 2 or more, I wouldn't take any tickets from him.

MAY 21, DAY 3
We've decided to do another garage sale this Saturday, May 21, while we still have everything set-up in our garage and will be adding more to what we have. We It will sort of symbolic of Down syndrome with the triplication of the 21st chromosome. The date "21" would signify the 21st chromosome and it would be the 3rd day for our garage sale.

Supporting Cognition Research via plus15

Sharing our personal stories, photos, and videos has raised awareness about Down syndrome. We hope you, our dear readers, have enjoyed following along as much as we have enjoyed sharing and meeting friends on this journey. Thanks for your friendship and encouragement. Thanks for reading!

Please consider helping us make a bigger difference in this world through the plus15 campaign. By supporting biomedical research to improve cognition, including learning, memory, and speech, by 15 percent, you will give Matthew and our friends with Down syndrome, more opportunities to full inclusion - academically and socially - and independent living as adults.

Our involvement in plus15 has a two-fold benefit. This fundraiser is a contest. The top fundraiser will receive an Apple iPad. IF we win, we will donate the iPad to Matthew’s preschool. Your contribution could help more children with special needs, such as Autism, who can benefit from its use during their therapy time. Please help us win the iPad for the kids!

We really appreciate your interest in helping!

Facts to Consider
Studies show that the life expectancy of someone living with Down syndrome has increased from 25 years to over 50 or 60 years over the past 3 decades. But cognitive abilities have not improved at a similar pace. Current advances made in cognitive research are promising of positive change, such as avoiding the early onset of Alzheimer’s disease. The National Down Syndrome Society (NDSS) cites that “25 percent or more of individuals with Down syndrome over age 35 show clinical signs and symptoms of Alzheimer's-type dementia. In the general population, Alzheimer's disease does not usually develop before age 50.”

Federal funding for Down syndrome research is only $55 per person. That's about 95% less on average than what the government spends on research for similar disabilities. A big chunk of federal funds goes to research to develop more tests to merely detect Down syndrome prenatally, instead of toward cognition research. We have collated data in the following tables as gathered from the sources listed below.

2008-2010 NIH Funding for Various Medical Conditions

CONDITION	US POPULATION (est)	2008 NIH FUNDING Million $	2009 NIH FUNDING Million $	2010 NIH FUNDING Million $
Cystic Fibrosis	30,000	90	86	86
Parkinson's	1,500,000	152	162	154
ALS	30,000	43	43	47
Huntington's	30,000	51	57	65
Multiple Sclerosis	400,000	169	137	133
Crohn's Disease	400,000	51	55	66
Down Syndrome	400,000	17	18	22
Fragile X	17,000	26	27	25
Autism	560,000	118	132	160
Duchenne MD	45,350	22	27	33

2008-2010 NIH $ per Capita Amount for Various Medical Conditions

CONDITION	US POPULATION (est)	2008 NIH $ per CAPITA AMOUNT	2009 NIH $ per CAPITA AMOUNT	2010 NIH $ per CAPITA AMOUNT
Cystic Fibrosis	30,000	3,000	2,866	2,866
Parkinson's	1,500,000	101	108	103
ALS	30,000	1,433	1,433	1,567
Huntington's	30,000	1,700	1,900	2,167
Multiple Sclerosis	400,000	422	343	333
Crohn's Disease	400,000	128	138	165
Down Syndrome	400,000	40	45	55
Fragile X	17,000	1,529	1,588	1,471
Autism	560,000	211	236	286
Duchenne MD	45,350	485	595	728

Sources:
2008 data from Dr. Brian Skotko’s testimony before the Down Syndrome Congressional Caucus in February 2009 (http://www.brianskotko.com/images/stories/Files/down_syndrome_congressional_caucus_feb_09.pdf) as provided by M.M. Harpold, DSRTF based on 2009 NIH Data (http://report.nih.gov/rcdc/categories/).
2009 & 2010 data sourced and adapted from 2011 NIH (National Institutes of Health: Estimates of Funding for Various Research, Condition, and Disease Categories) http://report.nih.gov/rcdc/categories/Default.aspx. Note that I calculated the 2009 and 2010 NIH $ per capita assuming unchanged population estimates from Dr. Brian Skotko’s 2008 data.

3 Possible Ways to Donate
To donate online, please click on Matthew’s photo below. Any amount would be helpful and appreciated.

Our fundraising page will open in a new window where you can donate online. Donations can be made anonymously, if you choose to do so. Online donations will be accepted until May 21, 2011. (Please be aware that this fundraising site automatically allocates 10% of the donation amount as a tip. Tipping the fundraising site is not necessary. You can select the option not to tip in the drop down menu before confirming your donation.)

If you would rather send a check, make it payable to "Down Syndrome Research and Treatment Foundation" and write "Bill and Ria" on the memo line. Please contact us so that we can send you more details. Check donations are accepted until May 14, 2011 because we have to get them to the DSRTF by May 16, 2011 in order for checks to count toward our total.

Donations are tax-deductible.

If you would rather donate a few minutes of your time, please share this post with friends on facebook, twitter, or on your blog, if you have one.

Thank you very much for your generosity and helping us spread the word! Your support of this great cause means a lot to us, especially to Matthew.

The link to our fundraising page is http://www.crowdrise.com/plus15/fundraiser/billandria.

Grab the button below for your blog.

<div align="center"><a href="http://www.crowdrise.com/plus15/fundraiser/billandria" title="Bill and Ria's plus15 page" target="_blank"><img src="http://i930.photobucket.com/albums/ad148/billandria/2011/April%202011%20blog%20photos/plus15button.jpg" alt="Bill and Ria's plus15 page" style="border:none;" /></a></div>

Thanks again for your support of this great cause, and thanks for reading!

About plus15

plus15 is an initiative of the Down Syndrome Research and Treatment Foundation (DSRTF), a non-profit organization funding cognition research. When you give to the plus15 campaign, 100% of your money will go directly to funding cognitive research at major research centers around the country, including Johns Hopkins Medical Center, Stanford University, University of San Diego and University of Arizona.

Here is a short video made by the DSRTF:

Support for Down Syndrome to the NIH

I received an email from the DSRTF (Down Syndrome Research and Treatment Foundation) today.

Dear Friends,

We are writing with an urgent request for your support for something that is of the utmost importance to us and anybody who cares about people with Down syndrome. We do this in concert with the many other Down syndrome organizations that have been at the forefront of efforts to mobilize the Down syndrome community to voice their support for this critical initiative.

The National Institutes of Health (NIH) has requested feedback on the creation of a centralized Down syndrome patient registry, database and biobank. They are expecting responses from the Down syndrome community and from anyone who is interested in supporting people with Down syndrome. The Down Syndrome Research and Treatment Foundation and the researchers we fund support these critical elements of Down syndrome research, and we would like you to join the broader campaign to maximize the volume of responses delivered to the NIH. If you have not yet done so, we would like for you to draft an email of support (more details below) or sign our online petition prior to the deadline of Friday, April 1.

Thank you in advance for helping to assure Down syndrome research receives a fair share of research dollars that will help people with Down syndrome live healthier and more productive lives.

Sincerely,
Chris Rose
Executive Director
Down Syndrome Research and Treatment Foundation

To help in this effort, you can do either of the following:
1. By April 1 (NIH deadline), e-mail your conclusions and recommendations about a Down syndrome patient registry, research database and biobank using the draft email (below) to: dsrdrfi@mail.nih.gov. Please cc: dsrtf@dsrtf.org so we can keep track of the responses.
2. Sign our online petition, which is available here: http://www.ipetitions.com/petition/downsyndrome/

I support this cohesive effort to help increase federal funding for Down syndrome. So, I wrote this letter (customizing the example provided by the DSRTF):

To Whom It May Concern:

As a mom of a 3-year old boy with Down syndrome, who brings absolute joy and inspiration into my life and all the lives he has touched, I strongly support the development of a formal Down syndrome contact registry, research database and biobank/tissue repository.

I am pleased that there have been a number of substantive meetings between leading Down syndrome organizations and the NIH to assist with the preliminary planning of such registries. Those organizations speak in the best interest of individuals with Down syndrome and their families and have determined how important it is to to establish a Down syndrome contact registry, research database and biobank/tissue repository. I encourage you to consider their recommendations.

I appreciate the NIH’s renewed interest in Down syndrome research and urge you to fund this essential component for long-term improvement of the lives of people with Down syndrome. People with Down syndrome deserve it.

Sincerely,
Ria

Your turn.

World Down Syndrome Day 2011

The International Down Syndrome Coalition for Life (IDSC), which is a non-profit organization educating medical staff and families with a prenatal diagnosis with up-to-date information about Down syndrome, has created a video featuring many amazing people living with Down syndrome. (Matthew and Elizabeth are in this wonderfully made video too!)


March 21 is chosen as World Down Syndrome Day because the date "3/21" represents the triplication of the 21st chromosome. People with Down syndrome have 3 copies of the 21st chromosome instead of 2. It is celebrated by Down syndrome organizations all over the world.

In honor of World Down Syndrome Day, +15 is putting together a collage of photos with the words "One of Them is Me" to send to policymakers and to advocate for increased research funding. Here is the photo we shared.

His DS

Elizabeth is 10 months old. She is Matthew's DS - Dear Sister. She understands several words and names like 'cat', 'shake', 'Daddy', 'Mommy', 'Matthew'. She says "uh oh" when she drops something from her food tray, and says "na-na-na" while shaking her head "no" when I say no to something.

She loves to snuggle with her stuffed animals. She lays on them and goes "aaaahh." She can already blow into the the toy trumpet, which Matthew was only able to do when he was well over a year old.

Like Matthew, she's very observant. She has learned to say and wave hi very easily. The learning differences are apparent between the two. She processes her environment and any stimuli faster and reacts faster than Matthew does. It might be a function of how neural circuits in the brain are not as strong in people with Down syndrome, according to scientific findings by the Down Syndrome Research and Treatment Foundation (DSRTF), hence affecting the learning process. But even if Matthew learns slower and differently, the development paths are the same.


She walks with a sturdy push toy. She has taken a couple careful steps forward independently.


She is very motivated to be mobile to keep up with her big brother. With her faster-than-we've-been-used-to rate of development, we think that this will help Matthew's development too further down the road, particularly with language and social skills. Having another little kid to imitate and interact with is probably more motivating and fun in many ways than just having us boring, old parents, right?

Monkey see, monkey do. If Matthew is pushing his ride-on toy down the hallway, she wants to push one too. When Matthew plays with blocks, she plays with blocks too. When he pretends to cook, she is right there with him pretending to eat the plastic food. Sometimes Matthew will, without any prompting from me, plunk a box of blocks or a basket of play food between himself and Elizabeth. It's his way of telling her "Let's play!" which Bill and I are very happy about because he is initiating interactive play, not just parallel play.




Sharing is an issue every now and then. Modeling how to share helps Matthew understand what to do. Being 3, he shares toys only when he wants to.

They enjoy wagon rides together. What's not to love about wagon rides? As a friend commented on one of my facebook photos, "Warm sun, cool shades and riding with the top down."


Are we glad that Matthew has a sibling? Absolutely! Do we wish that the birth order was reversed with him as the younger sibling with Down syndrome? Sometimes I do just because I think having an older sibling without Down syndrome would bring a different dynamic to the table. But I like the birth order as it is anyway. It is how it is.


It's wonderful to see that they enjoy each other's company. We hope this bond only gets stronger.

Accelerating Scientific Research For Down Syndrome

As a mom of two, I am heavily invested in my children's futures. I want both of them to be independent, productive contributors to society.

As a mom of a child with Down syndrome, I want just as many opportunities available to Matthew in his future as there would naturally be for Elizabeth. I want Matthew to be accepted and respected. And I want Matthew to have greater options in life than he might have otherwise.

I am always interested in new scientific research about Down syndrome. Three groups that actively Down syndrome medical and cognitive research are:
- Down Syndrome Research and Treatment Foundation (DSRTF)
- Global Down Syndrome Foundation
- Research Down Syndrome

The DSRTF has an ongoing campaign called plus15.

For every dollar donated to plus15 before midnight tonight, a donor will match 3 to 1. The plus15 campaign funds research at major research centers, including Johns Hopkins Medical Center, Stanford University, University of San Diego, and University of Arizona, into how to improve the memory, learning, and speech of people with Down syndrome by 15 percent.

Down Syndrome Achieves is another organization that is spearheading the drive for more Down syndrome research work and legislative action. Lisa at Living in the Light blogged about Down Syndrome Achieves in her entry "A New Era in Advocacy for Down Syndrome".

I listened to their eye-opening and very interesting web conference this evening. It was shocking (and very sad) to see the disparity in government funding for Down syndrome and other diagnoses. Basically, more funding for Down syndrome means a possible acceleration of scientific research and treatments to improve learning, cognition and communication. I'll share more details about it in a separate blog entry. Another web conference is scheduled on February 17, 2011.

It all sounds promising. I am hopeful. If the research translates to good options for improving learning, cognition, and communication, which in turn can lead to better opportunities and independence, then I am for it. Are you?