Madison Area Down Syndrome Society News

Thank You For Sharing Your Family With Us

Tue, 08 May 2012 21:06:39 GMT

Last month, I asked you to share your best family photos with us so we could include them in the new materials we are developing for new parents and the general community. You all came up big.

If you are interested in seeing our new crop of photos please follow the links to the photo albums below. They are great. Thank you again.

http://www.madss.org/2012Photos

http://www.madss.org/2012Photos2

A Follow Up on Many Strands Talk Given by Kristen Tillona from Berkshire Hills Music Academy

Mon, 26 Mar 2012 16:25:41 GMT

Back on February 8^th, Kristen Tillona came to Madison to tell us how Berkshire Hills Music Academy (http://www.berkshirehills.org/) develops the talents of young adults with Down syndrome. Many of you who attended had some questions and Kristen wanted to make sure she answered them to the best of her ability.

MADSS: Please remind us about Berkshire Hills Music Academy.

Kristen: Berkshire is for individuals who love music that are 18 to 30 years old who have special learning needs. Berkshire uses their love and aptitude for music to teach life and vocational skills through music. Our insight is that music intelligence is independent of IQ, and we built a community here focused on joy and each individual’s strengths.

MADSS: What kind of impact does your academy have those who attend?

Kristen: One parent recently sent us a note telling us “Katy had tremendous growth in self-esteem, independent living skills and social emotional growth.”

MADSS: Moving to Berkshire is a big commitment. Do you have a way for an individual to “sample” the Berkshire experience?

Kirsten: We suggest families try our two week summer program. You can learn more on our website http://www.berkshirehills.org/.

MADSS: One of the areas of concern is how a family can pay for this experience. Do you have any additional insights or suggestions?

Kirsten: Organizations like MADSS and the NDSS (www.ndss.org) have very small grants you can apply for. Also, in my experience, families with access to IRIS funding through their state have been able to secure reimbursement.

Finally, a family may be able to use the IEP process to have their school district pay for out of district placement. For example, you may be able to use summer services to send the individual to the two week summer session at Berkshire.

It is important to get a placement to Berkshire (or any of the other academies out there) into the IEP years ahead of time and expect the initial answer to be “no”. If the answer still stays “no” after some pushing on your part, you may need to get some legal help. If you don’t already have a lawyer with a specialty in special education rights, you can search for one at http://www.copaa.org/.

Did You Know That…

Thu, 15 Mar 2012 21:04:23 GMT

Did you know that…

…Congress has the opportunity to allow families with a child with DS to actually save money for that child (for housing, education, therapies, medical treatments and more) like they would save for their other children and can do so in a way that can reduce federal SSI and Medicaid costs?
...Basic scientific DS research is the most lowest funded areas per capita than any other area?
…There is a bill in the House that is up for a vote (and currently looks likely to pass) that will make it easy for school districts to avoid educating children with Down syndrome and other special needs?
...That many people with DS, after receiving proper training and support, can and do achieve and maintain employment and live independently?
…As of the start of the month, and much to my embarrassment, not a single member of the WI congressional delegation had stepped up and joined the truly bi-partisan Down Syndrome Caucus?

If you didn’t, don’t worry because many of our Senators and Congress-people didn’t know either. And, that is why I joined our friends at Wisconsin Upside Down (http://www.wiusd.org/) and the Down Syndrome Association of Wisconsin (http://www.dsaw.org/) to join advocates from across the country at the 2012 Buddy Walk on Washington on March 1^st.

The Buddy Walk on Washington is led by the National Down Syndrome Society (http://www.ndss.org/index.php?option=com_content&view=article&id=265&Itemid=155).

I set up a small photo gallery of some of my pictures from the day here: http://www.madss.org/bww2012. I had chance to meet with the staffs or actual elected officials of most of the Wisconsin delegation to Washington, but these pictures are only for the offices of the officials that represent South Central Wisconsin.

In order, the first four pictures are with Travis Roby in Rep. Ron Kind’s office, Casey Higgns in Rep. Paul Ryan’s office, Carrie Solomon in Rep. Tammy Baldwin’s office, and Amy Bos in Rep. Jim Sensenbrenner’s office. You can see Robbin Lyon, Ron Malloy, Nick and Sarah Pingel, and Tom O’Day in those photos as well. The last picture is of me and Senator Ron Johnson. The gentleman standing behind the Senator is Tom O’Day at DSAW. I also took a picture with one of Senator Herb Kohl’s senior staffers, Sarah Levin, but it didn’t come out.

So what came of this trip?

First, having been a tiny bit political in a past life, I know that that these political leaders pay attention when their constituents talk. When Tom O’Day and I started discussing the bill for the ABLE Act (the tax advantaged savings program for individuals with developmental disabilities), Senator’s Johnson’s staff immediately mentioned that they have received a lot of letters and emails from you about that. MADSS now has contacts in these offices we can and should use.

Second, Senator Johnson will be sending his regional director for our area to Support21 (http://www.madss.org/mastercalendar?eventId=446272&EventViewMode=EventDetails).

Third, Sarah Levin, the staffer who works for Senator Kohl on the Senate Aging Committee, asked us to draft “Report Language” that will help balance funding for basic DS research. We provided Senator Kohl with that language in the middle of last week. This language gets voted on as part of the budget and is subject to plenty of wrangling in the near future.

Fourth, Rep. Ron Kind announced on Tuesday, March 13th that he would be the first member of the Wisconsin delegation to join the DS Caucus and he was sorry he didn’t join earlier. I shared this with all of you for the first time on Wednesday, March 14 here: http://www.facebook.com/pages/Madison-Area-Down-Syndrome-Society/159035010996#!/photo.php?fbid=10150584892910997&set=a.438362700996.238624.159035010996&type=1&theater.

I have some more follow-up to do in the next week or so. After that, it is important that all of us get serious about making sure our elected officials at the local, state and federal levels hear from us. You are the experts when it comes to Down syndrome and our political leaders need you to make the best possible decisions.

Please the “add comment” feature below to share what ways you have shared your knowledge and understanding with our elected representatives and their staffs.

Good Food = Good Brain

Thu, 01 Mar 2012 22:38:17 GMT

Posted By: Sterling Lynk

Once again, we are indebted to Pat Wilson and the Alzheimer's and Dementia Alliance of Wisconsin for sharing with us the information below on what it takes for individuals with Down syndrome and everyone to stay mentally sharp.

Considerations for a Brain-Healthy Diet

We all occasionally treat ourselves to foods that taste good, but are not healthy for us. A good goal would be to reduce those occasions and learn to enjoy a variety of healthier choices.

Brain-Healthy Foods

Fruits: Blueberries, apples, oranges, strawberries, blackberries, raspberries, pears, peaches, cherries, pomegranates, mango, kiwi, papaya, cantaloupe, prunes, raisins, plums, red grapefruit, acai berries …
Vegetables: Spinach, kale, broccoli, asparagus, tomatoes, Brussels sprouts, alfalfa sprouts, beets, collard greens, bok choy, cauliflower, turnip greens, dandelion greens, red bell pepper, onion, eggplant, garlic …
Legumes: Lentils, peas, beans (red, kidney, pinto, black, garbanzo, soy…)
Soy plant proteins: Miso, seitan, tempeh, tofu
Fish (not fried): Wild salmon, halibut, sardines, anchovies, tuna, mackerel, herring….
Whole grains: Oats, barley, buckwheat, maize
Nuts & Seeds: Walnuts, almonds, hazelnuts, pecans, peanuts, flaxseed, sesame seeds, sunflower seeds, pumpkin seeds… (but watch the added oil, sugar and salt!)
Fat & Oils: Canola oil, olive oil (extra virgin), flaxseed oil, wheat germ oil, fat from fruits (avocado, acai berries, olives), but not coconut or palm oil
Spices: Cinnamon, ginger, fenugreek, rosemary, turmeric, oregano, cayenne, clove, nutmeg, bay leaf, curry powder (because it includes turmeric)

Brain-Neutral Foods

§ Low-fat yogurt (without fructose), low-fat kefir, acidophilus milk, skim milk, soy milk, soy cheese, peanut oil, skinless poultry

NOT Brain Healthy Foods

Meat: especially red meat; fried fish; fish with mercury contamination (king mackerel, shark, swordfish, tilefish);
Charred, fried, grilled or burnt foods
Full-fat dairy products: ice cream, whole milk, cheese, cream, butter, etc.
Foods with trans-fatty acids: margarine, fried foods, commercial baked goods, chips, pastries, most crackers, candy, puddings, foods containing hydrogenated oils...
Foods with high glycemic load (high in fast-metabolizing sugars and refined carbohydrates) such as bagels, English muffins, baked potatoes, instant rice, rice and corn cereals, pasta, pies, cakes, ice cream, cookies, foods containing high-fructose corn syrup

Maintaining Brain Health for Individuals with Down Syndrome

Thu, 16 Feb 2012 19:18:13 GMT

Posted By: Sterling Lynk

The good news is that life expectancy for individuals with Down Syndrome has grown. The challenge is that these same individuals are now experiencing higher than average rates of Alzheimer's and dementia. This is why I am grateful that Pat Wilson and the Alzheimer's and Dementia Alliance of Wisconsin were able to share the following tips for staying mentally sharp.

Maintaining Brain Health

– Tips for Staying Sharp at Any Age –

Your brain is not only needed for thinking. It also affects everything you do, sense and feel. We all want to keep our brains functioning as well we can, for as long as we can. These tips can help:

1. Maintain a healthy cardio-vascular system to ensure an adequate blood supply to the brain. Your brain cells depend upon a healthy supply of oxygen and nutrients from your blood to survive. About 25% of the blood flow from each heartbeat is directed to your brain to feed it and to carry away waste products. When this is interfered with, brain cells die.

Keep your body weight, blood pressure, cholesterol and blood sugar levels within recommended ranges
Eat less fat, sufficient protein, and more antioxidant-rich foods – (think: colorful assortment of fresh fruits and vegetables)
Exercise to keep your blood flowing, your lungs strong, and your weight under control
Stay hydrated, quit smoking, limit alcohol consumption
What’s good for the heart, lungs, and blood vessels is good for the brain!

2. Get physical exercise. Physical exercise not only keeps the blood flowing, but also can encourage the development of new brain cells and brain-cell connections. Exercise reduces stress and increases endorphins in the brain – which improves mood, reduces depression, and helps keep us active and involved. Exercise also improves balance and muscle strength which can reduce falls. Outdoor exercise supplies the body with vitamin D – which is needed for good brain function.

Even just walking 30 minutes a day can make a difference in brain health
Dancing, tennis, aerobics and other activities that involve both physical exercise and thinking (mental exercise) appear to be most beneficial to the brain
Simple ways to increase exercise are to take the stairs, walk or bike instead of drive, fetch things for yourself-instead of asking others, use a push lawn mower, plan active social activities such as walking together instead of meeting for lunch, go dancing, bowling, paddling or hiking rather than to dinner or a movie.

3. Challenge your brain. Keeping your brain active and engaged increases its vitality and builds reserves of brain cells and connections. The more brain cell connections and pathways you’ve developed – the more resilient your brain will be should future damage occur.

Exercise your brain in a variety of ways to strengthen and improve all-around function.
Brain games like crossword puzzles, sudoku, and word search are fun – but only exercise part of your brain – so look for other brain stimulating activities, as well.
Read, teach, learn something new (a skill, language, poem, joke, song, dance, knowledge), use your creativity, make or use a map, do math in your head, write, play a new game, do your taxes, attend a lecture, “think outside the box.” These activities each exercise and strengthen different parts of your brain.
Ask questions. Be curious. Take an interest. Try something new. Don’t retire your brain when you retire from your career.

4. Connect with others. Strong social ties have been associated with better mental health and a healthier brain. So – be social, converse, volunteer, join a club or organization, take a class, invite someone over, play with the grandchildren – or at least turn off the TV and walk the dog.

5. Protect your brain.

Take precautions against head injuries: wear your seat belt, wear a helmet when biking, unclutter your house and install shower grab-bars and stair-railings to prevent falls.
Manage your stress levels: prolonged high levels of stress destroy brain cells.

6. Get enough sleep. Your brain has important work to do while you sleep, and requires sufficient, uninterrupted, deep sleep to function well at any age. Seek advice if this is an on-going problem area for you.

7. Treat depression. Prolonged deep depression will impair your ability to follow the other advice on this sheet – and is a risk factor for dementia. Seek help. Treatment is available.

8. Think positive and have something to live for! Attitude is half the battle in any endeavor. Having goals and a purpose for living gets you out of bed in the morning and keeps you going, even when things get difficult.

9. Make an action plan – and start today!

Looking for a Pediatrician?

Thu, 02 Feb 2012 21:45:06 GMT

By: Sterling Lynk

Late last year many of you shared your lists of favorite professionals, the doctors, dentists and therapists who really get it. Over the next couple of months we will be sharing the most recommended providers in each category for each of the nine-counties our members come from.

This week, we are sharing your favorite pediatricians.

Your Top Choices:

Dr. Richard Ellis – UW-Health Fitchburg Clinic

(608) 274-5300

Dr. Heather Rainwater – Associated Physicians, Regent Street, Madison

(608) 233-9746

Dr. Julie Waraksa – Dean, Janesville

http://www.deancare.com/doctors-locations/find-a-doc/doctors-profile/?id=2027

Please Share

Do you live outside of Fitchburg, Madison and Janesville and know a great pediatrician? Please hit the “Add Comment” button below and tell us about them!

Looking for a Special 10 to Give 15

Thu, 19 Jan 2012 22:04:52 GMT

By: Sterling Lynk

Anita Bhattacharyya, researcher at the Waisman Center, is looking for a “Special 10” to help her complete her current brain development study. She sold me. Here is a picture of me donating skin cells from January 5^th:

But, I am getting ahead of myself.

Earlier this week, I had the chance to talk with Anita about her quest to understand the how the brain of an individual with Down syndrome really develops. Her work has the potential to positively impact individuals with Down syndrome in our lifetimes. Here are my notes from our talk:

Describe the results you are hoping for. What could your research mean for an individual with Down syndrome in our community?

Brains develop prenatally. Unfortunately, we really understand very little about how that happens. We do know that the brain of an individual with Down syndrome develops differently. We need to conduct some very basic research to understand how. We take donated skin cells and then turn those skin cells into pluripotent stem cells. While we turn those stem cells into neurons we can actually watch how those cells would develop prenatally. Once we understand how that development happens, further research can be done to discover treatments, both medical and behavioral, to improve cognitive functions in people with Down syndrome.

What is the funding environment for research on Down syndrome?

The recovery act helped fund Down syndrome research. At the national level, there has been an attempt to push forward basic research on Down syndrome but that has not really changed the amount of resources available, especially when compared to research for other disabilities. Also, private foundations tend to not fund the basic research that is needed right on Down syndrome.

How many more people to do you need to complete your research on brain development?

We need skin biopsies from five more individuals with Down syndrome and four more biopsies from typically developing individuals. We use the samples from the samples from people without Down syndrome was a control. The biopsy takes less than 15 minutes and is virtually painless. Since these stem cells come from donors, there are not the ethical questions that embryonic stems cells have.

What else are you working on?

Since people with Down syndrome are living longer we are seeing more and more cases of Alzheimer’s disease in people with Down syndrome. We need to under the development of Alzheimer’s in individuals with Down syndrome. We will use stems cell created from donated skin cells to follow up the brain imaging studies my colleagues here at the Waisman Center are conducting.

Do you have 15 minutes? You can help Dr. Bhattacharyya complete this necessary and basic research. Please email her at Bhattacharyy@Waisman.Wisc.Edu with any questions you have or if you are interested in participating. Only 10 of us need to step up.

If you are really curious, you can come by the office at 301 N Broom Street in Madison, and I will show you the tiny spot where they took the skin biopsy.

Are You Looking for a Good Dentist?

Thu, 05 Jan 2012 19:40:50 GMT

By: Sterling Lynk

This week, we are sharing your favorite dentists.

Your Top Choices:

Dr. Doug Wilson - Madison Pediatric Dental (Dental and Ortho)

100 River Place; Suite 110 Madison, WI

http://madisonpediatricdental.com/

Dr. Allison Dowd and Dr. Tim Kinzel – Children’s Dental Center

Madison, WI and Fitchburg, WI

http://www.madisonkidsdentist.com/

Please Share

Do you live outside of Madison or Fitchburg and know a great dentist? Please hit the “Add Comment” button below and tell us about them!

Did You Miss Dr. Robert Schoen from Research Down Syndrome?

Thu, 08 Dec 2011 21:02:39 GMT

Dr. Robert Schoen is the founding president of Research Down Syndrome (http://researchds.org). On November 15th, Dr. Schoen came to town share with us the latest in advances in Down Syndrome Research, how Research Down Syndrome is supporting that research, and what you can do to help. This talk was highly rated by the members who were in attendance.

This recording is in four parts, about 20 minutes each. After you watch it, use the comment function to share what you think.

Do You Want a Little Inspiration?

Thu, 17 Nov 2011 19:45:21 GMT

Here is about 45 minutes of the panel discussion from Down Syndrome: Day with the Experts hosted by the UW-Madison's Waisman Center. I was especially inspired by Doris. She first speaks in part 3.

You can also reach this video by going to http://www.youtube.com/playlist?list=PL1DC9E96EC8A342C4. You can also check out the other videos on our YouTube channel.

Please Share Your Ideas

Fri, 28 Oct 2011 14:36:13 GMT

By: Sterling Lynk

Very early this week the MADSS board held their annual strategic retreat. The purpose of this retreat was to clearly define the results that need to be pursued in 2012 and to orient MADSS towards our 2013 Vision, which I first wrote about back in July here. The board also had firmly in mind what you told us in a survey distributed back in July, especially about having a lasting impact. You can find the results and some thoughts on those results here.

The board has reaffirmed its intent for MADSS to use its available resources to ensure that individuals with Down syndrome in our nine counties (Columbia, Dane, Dodge, Green, Iowa, Jefferson, Richland, Rock and Sauk) have the opportunity to maximize their potential within environments of acceptance. In 2012, MADSS will pursue three priorities to realize this intent.

First, individuals with Down syndrome will 1) have access to resources to attain and maintain physical and mental wellness, and 2) develop life skills based on their potential.

Second, communities will be inclusive and accepting of individuals with Down syndrome. Ensuring accepting and inclusive communities includes, but is not limited to, the following: 1) Political, governmental, and community leaders become advocates for individuals with Down syndrome; 2) Employers provide employment or vocational mentorship opportunities for individuals with Down syndrome; and 3) Medical providers are educated about Down syndrome and best Down syndrome-related care practices.

Third, the support networks of individuals with Down syndrome are well informed and well connected to others impacted by Down syndrome. These support networks include parents, siblings, grandparents, extended family, friends, advocates and service providers/professionals.

I personally appreciate the thought and diligence the board put into deciding these priorities and figuring out where we should go. Now it is time to map out how we get there. I as write this, I am taking a break from pulling together our 2012 budget and programming plan. It is clear to me that we do some of this pretty well already, some of it we do a passable job at, and the rest we don’t do it at all. That is why I want to hear from you.

How do you think we can make worthwhile headway on our three priorities in 2012? Which organizations in our area already doing a bang up job one or more these priorities? How do we engage and support grandparents, siblings and others who support those with Down syndrome? How do we do a better job of connecting with parents?

I promise everyone who reaches out to me will be heard.

Please Share

Please send an email to sterling@madss.org or call (608)692-7653 with your thoughts, suggestions and leads.

Links

http://www.madss.org/news?mode=PostView&bmi=653548

http://www.madss.org/news?mode=PostView&bmi=670043

Check Out These Photos From Recent MADSS Events

Fri, 14 Oct 2011 19:56:58 GMT

Author: Sterling Lynk

I wanted to share with you the photos I have been sent from many of the recent MADSS events. All of these are located on our Facebook page.

By clicking here you can see a nice photo of Kaethe, Austin and Emily at the Teen Group's August dance.

Please click here to see a couple of pics from the DADS campout.

Since you are already on our Facebook, please check out all of the neat photos and memories that other members have shared from our 2011 Step Up Walk. I encourage you to share your own photos and memories from this year's walk.

First, Thank You. Second, a Challenge.

Thu, 29 Sep 2011 19:29:34 GMT

Author: Sterling Lynk

First things first - Thank you.

Thank you to Anne Stevens, Scott Hinkelman, Tim and Kate Wing, Tammy Hahn, Brenda Ray and all of the volunteers that made sure everything at the walk went well.

Thank you to the long time walk organizers and supporters we honored at 2011 event.

Thank you to our gold, silver and bronze sponsors: Scooter Software; BMO Harris Bank; UW Health; The UPS Store – Fitchburg; Madison Women’s Health, LLP; Communication Innovations; Ryan Brothers Ambulance; Dean and St. Mary’s; AlJan Company Orthotics; Associated Bank; Badgerland Agri-Systems, Inc.; Bodilly CPAs & Consultants, LLP; Farmers Insurance Group – Joe Boese Insurance Agency, Inc.; First American Title; the Law Firm of Murphy Desmond SC; M3 Insurance Solutions; Madison Concourse Hotel and Governor’s Club; Quantum Devices, Inc.; State Farm Insurance – Agent Jim Hartman; and, Summit Credit Union.

Thank you to our partners: LaMovida WLMV 1480; Pepsi; Skyway Productions; Special Olympics; Custom Canines; and, Wenzel’s Farm Sausage.

Thank you to the companies and individuals that gave items and experiences for our silent auction.

Thank you to Sarah Carlson for being an excellent Emcee.

Most of all, thank you to all of you. Over 500 of you came out on a nice Saturday, September 17^th to increase the community’s awareness of Down syndrome and to support friends and family who are impacted by Down syndrome. I appreciated meeting many of you and I am looking forward to another strong year in 2012.

Now, A Challenge.

I was so busy during the walk I only managed to take 4 decent photos. They can be found on our Facebook page here.

Please share your digital photos from the walk on the MADSS’ Facebook page and, if you want, write a little bit about your experience that day. The four people whose photos receive the most likes between September 29^th and October 6^th will win a small book of coupons for free custard from Culvers!

So, first share your best pics from the day. Second, please get your friends, family, neighbors and co-workers on our Facebook page so they can like those photos.

Resources

http://www.facebook.com/pages/Madison-Area-Down-Syndrome-Society/159035010996

In Case You Missed It

Thu, 15 Sep 2011 21:16:00 GMT

By: Sterling Lynk

Last week many of your received the 2011 MADSS print newsletter. In case you did not receive your copy, or you just want another copy to share, a PDF of newsletter can be found here.

All of the contributors to this print newsletter really appreciate the positive feedback you have given us. We are glad you enjoyed it.

We Are Starting to Talk About This

Thu, 15 Sep 2011 21:11:29 GMT

By: Sterling Lynk

A few weeks ago I shared with you a story about the potential impact of new prenatal screening tests that will become available later this year and into next year (that story can be found here and my initial reaction to this story can be found here). I said then that we should really be talking about this.

Well, you have been and you have really been reacting to an opinion piece from The Witherspoon Institute that discusses potential regulation around prenatal testing that initial shared on Facebook.

I think this is the looming issue facing our community.

I think the first sentence of this article about these tests in the Mercury News why we need to talk more about this and sooner-than-later start acting; “Soon a simple blood test will be able to tell newly pregnant women if they are carrying a child with Down syndrome – raising the prospect, and perhaps the peril, of a world with fewer imperfections.”

Share Your Thoughts

Please click the “add comment” button below to share your thoughts. You are encouraged to check out the MADSS position statement on prenatal screening which can be found here.

Resources

http://marketplace.publicradio.org/display/web/2011/08/23/pm-freakonomics-fetal-genetic-testing-raises-big-questions

http://www.madss.org/news?mode=PostView&bmi=690035

http://www.thepublicdiscourse.com/2011/09/3844

http://www.facebook.com/pages/Madison-Area-Down-Syndrome-Society/159035010996

http://www.mercurynews.com/health/ci_18868875?nclick_check=1

http://www.madss.org/statements

Keep It Up Kaethe!

Thu, 01 Sep 2011 19:06:08 GMT

By Elizabeth Purnell

Earlier this summer Kaethe Sigelko, daughter of Nancy Didion and Wayne A Sigelko, had the role of one of the leading characters in a local production of C.S. Lewis’ story The Silver Chair. This part of the Narnia series is a darker story than most and one in which Kaethe’s character has to display deep emotion. As the character Rilian, Kaethe got to smash the chair that held her character captive at the key turning point in the play. Kaethe’s portrayal was in inspiration for the audience.

Acting, for Kaethe, has been something she has been doing for quite a while. When Kaethe attended middle school she was in a number of plays, like The Wizard of Oz and Little Women. In The Wizard of Oz she played the role of Auntie Em. For the past several summers she has acted in a group called The Lamppost Players who are on their second time through the Narnia series. Some of the other parts that she has played in Lamppost reveal her versatility as an actor: a hedgehog, a rabbit, a nurse, a town person, a dwarf and a many other characters. She also helps paint sets for the group and is very dedicated in what she does.

Keep up the good work, Kaethe!

Please Share Experiences

Please click the “add comment” button below to share similar experiences you or your child has had with expressing yourself.

Resources

http://www.madstage.com/Shows/thesilvercha110104.html

We Should Be Talking About This

Thu, 01 Sep 2011 18:56:47 GMT

By Sterling Lynk

Last week I shared this story with those of you who connect to MADSS on our Facebook page (click here to be taken directly to the story). It aired on the public radio program Marketplace. The correspondent was Stephen Dubner, co-author of the unique economic books Freakonomics and Superfreakonomics, and he discusses consequences of predetermining the genetics of our babies. After talking about the effects of gender selection in Asia, Dubner goes on to discuss a blood test that screens for genetic abnormalities, like Down syndrome and the possible impact that test will have when it reaches the market soon.

I haven’t been able to stop thinking and talking about the (not all that positive) possibilities illuminated by this piece all week. At a “check in” meal with one of my mentors, I ran out of time to finish my lunch because I was so busy processing this with him.

Other communities have been discussing this as well. Looking around, I quickly found interesting articles here and here discussing this topic. The MADSS board is currently finalizing our 2013 Vision I introduced to you in July which considers our role in tackling the issue that 80% to 90% of prenatal diagnoses of Down syndrome result in a terminated pregnancy.

I think we should all be discussing our potential responses to these changes in medicine. You should be talking about this with each other and with us. A couple of opportunities for you to do this would be to attend Day with the Experts at the Waisman Center and/or our November Many Strands session on the advances of Down syndrome related research. You can also use the comment function below to contribute your thoughts on these developments today.

Share Your Thoughts

Please click the “add comment” button below to share your thoughts. You are encouraged to check out the MADSS position statements on abortion and prenatal screening which can be found here.

Resources

http://www.facebook.com/pages/Madison-Area-Down-Syndrome-Society/159035010996

http://marketplace.publicradio.org/display/web/2011/08/23/pm-freakonomics-fetal-genetic-testing-raises-big-questions

http://wpr.org/moneymatters/marketplace.cfm

http://www.amazon.com/Freakonomics-Economist-Explores-Hidden-Everything/dp/0060731338/ref=sr_1_4?ie=UTF8&qid=1314904457&sr=8-4

http://www.amazon.com/SuperFreakonomics-Cooling-Patriotic-Prostitutes-Insurance/dp/0060889586/ref=sr_1_1?ie=UTF8&qid=1314904457&sr=8-1

http://www.theglobeandmail.com/news/opinions/opinion/deselecting-our-children/article2136096/

http://www.uscatholic.org/blog/2011/08/should-only-right-down-syndrome-kids-get-born

http://www.madss.org/news?mode=PostView&bmi=653548

http://www.madss.org/calendar?eventId=369486&EventViewMode=2&CalendarViewType=0&SelectedDate=9/1/2011

http://www.madss.org/calendar?eventId=375681&EventViewMode=2&CalendarViewType=0&SelectedDate=9/1/2011

http://www.madss.org/statements

Decisions and Incomplete Scientific Information

Fri, 19 Aug 2011 14:26:14 GMT

Author: Sterling Lynk

Yesterday, I had the chance to meet Marsha Mailick Seltzer, PhD, director of the Waisman Center in Madison, and some of her public relations team. After a little while our discussion shifted to the kind of hard medical decisions families and individuals impacted by Down syndrome have to make in the face incomplete scientific information.

It seems like the “hard medical decision families have to make in face of incomplete scientific information” that inspires the strongest opinions in our community is the Changing Minds Protocol. If you are not familiar with this protocol I encourage you to start your personal research with (in alphabetical order) the Changings Minds Foundation and down-syndrome.org. After that I recommend reading this article published on July 29th in the New York Times Magazine.

Many of you have told me that the best resources you can access on almost any topic facing families impacted by Down syndrome are the experiences of other families. Many of you may not agree with the thrust of the article, I believe you will find the article well written, informative and a great example of exploring a tough issue through the lenses of science and personal experience.

Currently, MADSS does not have official position on the protocol (you can find our official positions here). But you can expect that MADSS will continue to facilitate our Society’s discussions on the protocol and other scientifically ambiguous innovations.

Please Share

Please click the “add comment” button to share with us your experiences with the protocol or how you navigated challenges situations. This topic inspires very strong opinions so I encourage all of us to only share our own experiences and choices, and not our opinions on other people’s choices.

Resources

http://www.waisman.wisc.edu/

http://www.down-syndrome.org/statements/2106/

http://www.changingmindsfoundation.org/

http://www.nytimes.com/2011/07/31/magazine/a-fathers-search-for-a-drug-for-down-syndrome.html?pagewanted=1&_r=4

http://www.madss.org/statements

Survey Says: You Are Having a Lasting and Positive Impact…Mostly

Fri, 05 Aug 2011 04:17:48 GMT

Author: Sterling Lynk

Recently, you were asked to participate in a very short survey about our Society. While the information was not very detailed, it does tell a lot about how big of a difference together we are making.

The last question of the main survey asked each of you to select 1, 2 or 3 MADSS activities that are most important to you. The Learning Enhancement Program (79%), Day with the Experts (67%) and All MADSS Events (58%) are the most important to you. Of the remaining activities, only Moms Take 5 (25%) and the Teen Group (20%) broke 20%. Personally, I don’t find any of that surprising. The most surprising result from this question was that no one who participated in this survey found Many Strands important to be in his/her top 3 despite that program’s similarity to Day with the Experts.

The first three questions on the main survey were of the kind that get to the root of well we are doing at fulfilling our purpose and making a difference. While these questions were modified to suit the survey, I learned about these from Bob Morris and Richard “Buck” Rhyme with Organizational Skills Associates when I worked them on an in-depth assessment of the Urban League in Madison. Apparently, most organizations prefer to not ask their boards, staff and members those three question out of fear of what will happen if the answers are not positive. We asked those three questions (and a few dozen more) of every ULGM staffer, board member and external stakeholder. The answers were enlightening for ULGM and they are enlightening for us at MADSS.

92% of you believe we are overall doing a good or very good job of advancing our mission, with the most frequent answer being that MADSS is doing a good job at advancing its mission (71%). 83% of you are proud to share you involvement with our Society with your friends, family and colleagues most of the time or all of the time. The frequent answer to this question was always (46%). These results are great indicators of the vibrancy, health and potential I wrote about in earlier here.

Of course, not everything was as positive. The third question in the survey asked the survey participants to rate how true is it that MADSS has a positive and lasting effect on individuals and families impacted by Down syndrome. 58% thought it was either very true or mostly true that we are having a lasting, positive impact. But, the most frequent answer to this question was that that it is only somewhat true that MADSS is making a real difference (42%).

The last result is not too surprising and not all that uncommon. Unless a group is fortunate enough to have a very clear “problem” and has a simple way to measure whether that problem is getting better or worse, it is hard to really know if you are making a meaningful difference. Even if a group has an obvious framing of the problem and the right measures, it takes the right systems and resources to move the needle, let alone really fix the problem. This result tells me that we haven’t yet consistently put together the right mixture of clarity, resources and systems.

What do I think this means for you? When I say “we” I am talking about all the people you might expect: the board and the staff. But, I am also talking about you the friends and members of our Society. Today, only two MADSS activities listed in the survey are solely powered by the board/staff team – the annual meeting and the Many Stands sessions. Everything else, including the events that attract almost all of the financial resources we have to make a difference (i.e. the Step Up for Down Syndrome Walk), are powered and lead by you. That tells me you (as well and myself and our board) are “more-or-less” are making a meaningfully positive difference to those we serve.

I want more than “more-or-less”, and I hope you do to.

Please Share

Please click the “add comment” button to tell us what crossed your mind when you read the results of the survey above? It seems like we have been missing something. What do you think we are missing?

Resources

http://orgskills.com/

http://www.madss.org/mission

http://www.madss.org/news?mode=PostView&bmi=627906

http://www.madss.org/calendar?eventId=329860&EventViewMode=2&CalendarViewType=0&SelectedDate=8/5/2011

July Spotlight: Meet Danielle, Abigail and Jeff

Thu, 21 Jul 2011 22:37:17 GMT

Author: Sterling Lynk

Earlier this month we caught up with this blended MADSS family: Danielle, Abigail and Jeff. Danielle was kind enough to answer our nosey questions and even let us raid her family’s photo album.

(From Left to Right: Danielle Conley, Abigail Conley, and Jeff Khoury)

MADSS: What was your reaction when you learned you were going to be a parent of a child with Down syndrome?

I didn't do prenatal testing for birth defects since news of any would not have affected my plans, so I learned that I was a parent of a child with Down syndrome when Abigail was a few hours old. I had been holding her thinking how much she looked like my family. Then she was taken to be examined as just as I was about to fall asleep, the pediatrician on call came in to tell me the baby exhibited physical signs of Down syndrome. Honestly, I don't know if I knew what the meant but the serious tone and use of the term "genetic testing to confirm" intimated this was not the average post-birth scenario. My reaction was quiet worry. Into the second and third days and beyond, I was worried about what the future would hold.

MADSS: What kind of things does your family enjoy doing together?

We enjoy the diversity of activities Madison has to offer, and take part in a little of everything, especially music related events and outdoor recreation. Abigail marched at the Capitol, carrying a Save Badger Care sign because she insisted! Abigail hoola-hooped at the Boom Box the Wasteland community repurpose event. The country music group Stealing Angels invited her on stage with them at the Majestic. Charlie Brooks gave Abigail the microphone at Brat Fest so she free-styled along with the Madison Blues All-Stars. The biggest, best, and most recent event was Abigail charming Katy Perry at Summerfest. This resulted in an invite to come on stage, where she and Katy danced to "I Wanna Dance With Somebody" in front of 20,000 attendees!

MADSS: Who is someone that inspires you and your family?

I'm inspired by every day people. Meeting someone genuine like Katy Perry, who instantly "gets" Abigail, is inspiring, but there is inspiration all around if you are open to it. I have been inspired this year by being around people with disabilities advocating for themselves during the budget bill debates, by those that support the disability community, and by the special athletes cheerleaders with whom Abigail competes. I am certainly inspired by my daughter, who faces challenges more difficult than most adults will face but does so with a smile on her face and a will to persevere.

MADSS: What has been challenging for your family?

The most challenging aspect is having a student with special needs in the public school system. While the inclusive environment is a big plus, many schools struggle with meeting special needs. Still, in our experience our school is a cut above the rest.

MADSS: What is most rewarding about being a parent?

The most rewarding this about being a parent is seeing the smile on my daughter's face when she has accomplished something and is proud of herself.

MADSS: Why is MADSS important to your family?

MADSS is a place for us (parents of and people with Down syndrome) to build a community around. I believe in the "pay it forward" philosophy. Each of us has something to contribute to the world and to MADSS. I'd like to make more connections because it’s important we all come together, stick together, share our resources/knowledge, and strengthen our community,

Share Your Story

Please click the “add a comment” button and tell us about your family’s experiences. Also, we are accepting nominations for individuals and families for the August Spotlight. Please email those to sterling@madss.org or call (608)692-7653.

Resources

Danielle is organizing an activity group for elementary aged children and their families. Everything you need to learn about this event can be found on the MADSS calendar at http://www.madss.org/calendar?eventId=357997&EventViewMode=EventDetails.