Repost: Disparity in Research Funding for Down syndrome

The following post was written by my beautiful friend Becca who can be found at The Bates Motel blog.

Many of you know lots of facts about Down syndrome. I like to think I do, too. But this week I learned some facts that I didn't know before, facts that truly astounded and shocked me, facts that left me feeling sad and frustrated, but also energized and motivated. Motivated to try to rally the troops, those legions of you with loved ones with Ds, to do something so that my daughter, Samantha, the love of my life, can have a longer, healthier, more productive life.

1 in 691 live births is a baby with Down syndrome. I bet that's a fact that you already knew.

An average of $42 in Federal funding is given per person with Ds (there are @400,000 in the US) for research, compared to the $3,000 per person with Cystic Fibrosis (there are @30,000). I bet many of you didn't know that one, although I posted it a few weeks ago.

Really, I could spew facts and numbers till the cows come home, but I honestly don't want to lose you on this. This is too important.

Why such a disparity? Perhaps a person with a cognitive disability is viewed as less of a person than someone with a physical disability. Valued less. Worth less.

Samantha is not worth less.

Ds researchers are able to come up with solutions to the issue of cognition, but they don't have the means. It overwhelms me to think that there could be a solution in just a few short years that will make a tremendous difference to Sammi. But without major Federal funding, this won't happen. We're so close. It's a no-brainer, really. But why can't we get the backing we need to do this?

Down Syndrome Achieves is an organization dedicated to community support, advocacy, research and lobbying for legislative reform and federal funding for Down syndrome research. Yes, there are many organizations out there that support families and research, but after more than 40 years of plugging along, there still has been no truly organized effort to join forces and no basic infrastructure to really get things done. DSA seeks to do just this, and are off to a flying start, with the joint support of several well-known research hospitals and others in a position to influence the folks that make these funding decisions. Please visit their website, http://www.dsachieves.org/, join their mailing list, help to unite our scattered Ds organizations for the one cause we hold so near and dear to our hearts, making lives better for our children.

I'm not asking for money (although if you happen to have a cushy pocket of disposable income, it might be nice...).

I'm asking for strength in numbers and for you to spread the word, through your blogs, through your tweets, through Facebook, through phone calls and e-mails to your local Down syndrome associations to get involved. Feel free to share this post. There are so many of you out there with connections. Please reach out and use them.

At a DSA webinar last week, I learned that there are 170 groups with Federal funding ahead of Down syndrome, including tobacco and alcohol cessation programs. Why?? Counselling can often help someone with an alcohol or tobacco addition. Counselling will not help someone with Down syndrome. Yep, I just had to get that one last fact in here...

My Funny Valentines

Happy Valentine's Day! Thanks to another great promotion by Tiny Prints, I was able to send a few personalized Valentines to our family. They arrived within days and are beautiful.

Living the Dream

part 1 HERE, part 2 HERE

Why does my dream of being a Parent Consultant have to be put on hold?

On January 3rd I read an email about a job opening with PEAC for a program coordinator position. PEAC was looking for someone who could coordinate the Educational Right's Project and the Parent Consultant Network. The job is 20 hours a week. The office is in the heart of Philly and is housed within the offices of Vision for Equality. Some of the work of the program coordinator can be done remotely from home. Hours are flexible. Possibilities are endless.

My heart skipped a beat (maybe three) as I read the job description. If I had been given magical powers to design my ideal job, I would not have been able to conceive of such a perfect fit of my professional background, availability, and personal goals. It had been more than a decade since I updated my resume, so I contacted my references, submitted my application, and waited. Within days a PEAC board member contacted me to do a phone interview. Then I was asked to go into the city for a second interview. Shortly after, as Mark and I were with our realtor touring potential houses to buy, I received a call from PEAC's President. The job was mine and as such I will not be able to be a Parent Consultant during the time that I coordinate the program. My dream has evolved.

Not only do I have the most amazing family that anyone could ask for, but I get to experience both worlds. Friday was my first day. I will still be a (mostly) stay-at-home mom, but I also now have a job that is affecting change on individual and systemic levels.

We have a great sitter who is coming to the house and on the days that I go into the office I will be taking the SEPTA train. My walk to work from the station takes me by Chinatown. The office is 2 blocks from Independence Hall.

In my heart I'm still a girl from Iowa and I keep pinching myself to see if this is really my life. I am exactly where I'm supposed to be.

The Dream

continued from HERE

When Sophie was born 3.5 years ago I said goodbye to my dream job as a program coordinator at a domestic violence intervention agency to become a full time stay-at-home mom. My work since then has been as a volunteer advocate in the developmental disabilities community.

On January 2nd I awoke from a dream that felt more like real life than the typical nonsensical dream. I can still see details in my mind's eye. In this dream I returned to my old job at the shelter. My boss was there and everyone was expecting my return. There was no pomp and circumstance. It was as if I had only been gone for the length of a long maternity leave and I fell right back into the swing of things, as was expected of me. This vivid dream stayed with me, but I didn't know why.

Over a decade ago a steering committee with the Temple University Institute on Disabilities had a vision to create a non-profit organization that would work to assist families of children who have developmental disabilities in a truly innovative way. Born from the passion, dedication, pain, experience, and dreams of a small group of parents of children with special needs, Pennsylvania's Education for All Coalition, Inc. (PEAC) became a reality.

PEAC is a small organization with larger-than-life goals. Read more about their work HERE. PEAC believes that parents of children with special needs are experts in the disability field (because we are). Parent Consultants are trained to assist other parents by offering support via email, phone calls, in-person meetings, assistance in preparing IEP goals, and attending IEP meetings to support families. Parent Consultants also speak at universities and train student teachers. PEAC conducts IEP planning clinics and will be hosting an inclusion conference for 500+ participants in November 2011.

The ultimate goal is inclusion for ALL students with IEPs in their least restrictive environment. This means that for each child with an IEP, inclusion is specifically tailored to their needs and abilities. PEAC does not support forcing students into classes that would not be beneficial to them and without the proper supports and modifications. However, PEAC does believe that ALL children with IEPs can and should be adequately educated and included in their community schools.

The work of PEAC is multi-dimensional. PEAC assists individual families yet also works towards state-wide systemic changes to promote inclusive educational practices. PEAC connects with future educators (college students) and has quickly earned a very respected reputation at all levels of the educational system. At the heart of this work PEAC is a collaborative organization, not an adversarial one, whose ultimate goal is inclusion for all students, regardless of ability.

I want to be a Parent Consultant for PEAC. I want to have that knowledge and give back to others who need help navigating the (often) uphill battle that befalls parents of children with special needs in the educational system.

However, my dream has been put on hold.

Unblocked

It wasn't so long ago that I wrote this piece about being on a quest for something, without the foggiest idea of what I was searching for. Needing direction and unsure of what my next great adventure would be, I dreamed and I waited.

Then magic happened. Surreal, mind-blowing synchronicity.

We plan and God laughs, but I have learned to listen. My plan was to stay at home full-time until our children were in school. I traded in my working mom role to be a stay-at-home mom a mere handful of days before Sophia came bursting into our lives and changed us all from the inside out. Despite being unemployed, I continued my work as a volunteer advocate in my new and beloved community of families who love someone with a disability. The accomplishments I'm most proud of, such as two consecutive years heading the Champaign/Urbana Spread the Word to End the Word campaign, and the 1/2 day conference on safety issues for families and professionals, were born of a deeply seated passion, pain, and desire to improve this amazing world of ours.

Looking back at my life, a distinct pattern is glaringly obvious. I am drawn to people (usually women, but not always) who have great strength, compassion, power, beauty, selflessness, and a desire to help others. They are innovators with take-charge personalities who work tirelessly and are at once made of steel, yet are gentle as the rain. These are the people I crave to be around and hope to emanate.

A universal truth is that we learn the most from our adversities, pain, and failures. If I had not been raised in a home with an alcoholic and abusive father (sober 4.5 years now), I might not have started my work as a teen advocate for child abuse victims. I probably wouldn't have worked for 2+ years as an AmeriCorps*VISTA. The skills gained during this time and my understanding of the importance of serving others led me to my work as an advocate for victims of domestic violence for many years. Without Sophia I would surely have missed out on the soul-altering joy that comes with a membership in the disability community.

Trust. Faith. Letting go of the frenetic need to have control. Patience. Lessons I keep learning.

In my new corner of the world I was blessed to connect with 3 beautiful souls immediately after moving here. Cecilia encouraged me to attend a disability advocacy training called C2P2-EI. As a participant, I receive emails about local trainings, events, conferences, and job opportunities.

Out of the clear blue sky I read an email from this group that sent shock waves through my system. I was shaken. I kept hearing a line from Oscar in the movie Armageddon when they are about to launch in a rocket:

"Great, I got that "excited/scared" feeling. Like 98% excited, 2% scared. Or maybe it's more - It could be two - it could be 98% scared, 2% excited but that's what makes it so intense, it's so - confused. I can't really figure it out."