NDSS Interview Part 2

This week I am posting portions of a series of questions I asked Jordana Stern, Communications Associate for NDSS. Yesterday, Ms. Stern addressed the challenges people with Down Syndrome and their families face. One of the most interesting things I took from that was that people with Down Syndrome are living longer, thus affecting family decisions at the economic level, that had not happened before.

Today's questions focuses more on the work NDSS does. For more info on NDSS, please go to www.ndss.org

Again, please consider donating towards my $1,000 goal as I run for my niece Sabrina and NDSS.

2) NDSS has four areas of focus: Education, Development & Community Life, Policy, Research, and Healthcare. Can you talk about some of the successes NDSS has had in those areas? (Please note our four areas of programming below)

Jordana Stern: NDSS is focused on four areas of programming: community support programs, the NDSS National Policy Center, public awareness initiatives and the National Buddy Walk® Program.

NDSS Community Support Programs

NDSS leads a network of over 350 affiliate groups across the country, consisting of local parent support groups and other organizations that provide services to the Down syndrome community. Some key services NDSS offers to its affiliates and to the Down syndrome community as a whole include:

• The Goodwin Family Information and Referral Center

Through its toll-free helpline and email service, NDSS receives more than 10,000 requests a year for information on Down syndrome. The Goodwin Family Information and Referral Center is also supported by a translation service that can be accessed in over 150 languages.

• Publications

NDSS publishes A Promising Future Together: A Guide for New and Expectant Parents and informational brochures in both English and Spanish.

• Website

A comprehensive and up-to-date resource for families, professionals, affiliates and others, www.ndss.org receives over 3 million page views each year and includes an extensive Spanish translation.

NDSS National Policy Center

The NDSS National Policy Center strives to protect the rights and remove barriers for all individuals with Down syndrome. The work of the policy center is guided by its dynamic legislative agenda which includes a wide range of issues and touches every stage of life. These issues include education, health care, research, employment and independent living.

The NDSS National Policy Center:

• Works with Congress and federal agencies to develop and improve legislation

• Trains and educates parents, self-advocates and others to advocate on the local, state and national levels

• Organizes and participates in coalitions of national disability organizations

• Leads national and statewide Governmental Affairs Committees

NDSS Public Awareness Initiatives

The purpose of public awareness at NDSS is turn the mission of “value, acceptance and inclusion” into a positive, comprehensive national public awareness message. NDSS proactively reaches out to national media outlets including television, print, online media, and radio to secure editorial content on issues within the Down syndrome community, as well as to secure positive and inspirational news stories. NDSS monitors all forms of media on a daily basis, 365 days a year.

My Great Story is NDSS’ largest public awareness campaign, and its goal is to ignite a new way of thinking about people with Down syndrome by sharing and telling stories, which are displayed in a beautiful online storybook.

National Buddy Walk® Program

The Buddy Walk® is a national Walk program created by NDSS to promote acceptance and inclusion of people with Down syndrome and to raise funds for local and national initiatives that support people with Down syndrome and their families. The Buddy Walk began in 1995 as a public awareness and advocacy effort with 17 Walks. A fund raising component was added in 1999. Today there are 275 registered Walks with over 250,000 Walkers, which raise approximately $10 million annually across the country.

Charlie

NDSS Interview Part 1

Part of raising money for and organization is raising awareness for the good works an organization does. Over the course of this week, I am going to highlight questions I submitted to Jordana Stern, Communications Associate for the National Down Syndrome Society(NDSS). I submitted five questions, and each day I will highlight a different question.

1) What are some of the biggest challenges people with Down syndrome and their families face?

Jordana Stern: People with Down syndrome attend school, work, live independently, participate in decisions that affect them, and contribute to society in many ways; however, there are some challenges that individuals with Down syndrome and their families commonly face. All people with Down syndrome experience cognitive delays, but the effect is usually mild to moderate and is not indicative of the many strengths and talents that each individual possesses. Despite this, students with Down syndrome face barriers to a quality education all too often.

People with Down syndrome have an increased risk for certain medical conditions such as congenital heart defects, respiratory and hearing problems, Alzheimer's disease, childhood leukemia, and thyroid conditions. Many of these conditions are now treatable, so most people with Down syndrome lead healthy lives. In fact, the life expectancy of people with Down syndrome has risen significantly in recent years, increasing from 25 in 1983 to 60 today. As a result, for the first time, families of people with Down syndrome must plan financially to provide throughout this longer lifespan. Quality educational programs, good health care, and positive support from family, friends and the community enable people with Down syndrome to develop their full potential and lead fulfilling lives.

For more information on NDSS, please go to www.ndss.org

To donate towards my $1,000 goal for NDSS, please go to www.crowdrise.com/runningforsabrina

Charlie

Running in Douglas

This weekend was Mark's and my anniversary(well actually it is today). We celebrated by spending the weekend in the Saugatuk/Douglas, MI area. For those who aren't aware of this area, it is a typical summer resort area near Lake Michigan. Very laid back, artsy, old fashioned. Of course we were at a gay resort, so I am not too sure how old fashioned it could be.

My run yesterday took me through the sleepy town of Douglas. Douglas sits on Lake Kalamazoo. It is full of charm. I wanted to get a short run in, so I did some laps around the center of town. The odd tourist saw me bounding my way through the town. I was along the lake, in some neighborhoods, and along the main drag of Douglas.

The weather was plenty humid. I enjoyed my run though. While it was slow, I was fine with taking it slow in the hot and humid weather.

I got back to the resort where Mark was in the pool. A nice dip in the pool really caps off a hot run.

Charlie

Morning Run - Quiet

It was a quiet morning as I head on a 30-40 minute run this morning. I left our home and headed to 96th St. Instead of trotting just down 96th St, I veered into a neighborhood I have ventured into before, and ran along side a golf course.

The golf course and the quiet go hand in hand, not much noise, especially at 6am. I saw one dog wandering through a front yard, and an older guy running and wishing my a good morning. Otherwise....it was me.

The run was fine. It was a rolly course, as it is around here. I managed to do 2.88 miles in 37+ minutes. Not too bad. I really just wanted to get a run in for the week. I am under 10 miles for the week, but that goes up next week. We could call this a roll back week.

Off to Saugatuck, MI in the morning. It is Mark's and my anniversary weekend. I plan a run, and we'll see how that goes.

Charlie

Hot Laps

This week is an odd one to try to run, but trying I am. Yesterday Mark and I headed to the track for a short run. It was warm when we got there. The track is behind a local middle school. The track is rubberized, and it looked like it could be recycled materials, which is good.

I didn't want to be out too long, and Mark hasn't run in about a year. A long run, especially after a long run the day before would be too much. Off we went.

I felt good on the run. I was not setting the world ablaze, but with the sun out in force, pushing it really was not an option. My focus was on my form. I watched my shadow. I learn alot from my shadow. I see how my form is. I see how my weight is looking. I looked, and things were looking good. Would me shadow lie? I think not.

The total miles was 2 miles. No, that isn't a long time. It was just important to get out.

Charlie

Movin on the Monon

Today Mark and I headed for the Monon Trail. He took the bike, and I took my running shoes. The goal was to go out for an hour. Mark took off on his bike, and I went out for my run.

The Monon was busy with people running, biking, skating and walking. Good to see folks out enjoying the nice day. One cool moment though didn't involve a person. I was looking down the trail, and a brownish blur leaped across the trail. It was a deer. So sweet to see, but I was worried it would get injured from all the bikes around. Still, it was very cool to see it.

The run itself was great until the cool breeze died down, then it got warm, and I got slower. Still I was happy to be out and happy to be pushing myself to run for an hour.

Mark biked for over 8 miles in that hour. I ran 4.45 miles. Not my fastest, but with the heat, I think it was fine.

This is a busy week, and Mark and I go away next weekend. I need to figure when I can run this week.

Charlie

Carmel Marathon - One Story

I always find when it comes to a marathon, the story is not just the running, but who is running, and the great stories associated with the run. Today was the Inaugural Carmel Marathon, in Carmel, IN. I work in Carmel, so I led a cheer section along the route near our store. All week we have told folks we would be out there. One woman wanted to be sure we did something for her son - Andrew.

Andrew is 16, a good kid I have helped many times. I knew he was training for the marathon, because he would come in the store, and we would talk about what it would be like for him. Yesterday his mother brought him in to buy a shirt, and to talk to me some more about what the day would be like.

She saw we had cheer cards for people to create, so she started working on one, as I told Andrew what he could expect as he ran. I gave pretty typical advice, but one thing I told him was he would appreciate someone cheering for him. He smiled that,"Yeah, whatever you say smile."

His mother though wanted to know more. She was going to follow him on a bike and meet him at various spots. I told him this race would not be like a major race where thousands come out. He should feed off any cheering which comes his way. I told her if she was going to designate a spot to meet, make sure she is there, or it can wreck the runners head, wondering where his people are. She understood.

Finally she finished the sign. It said, "Go Andrew!!" She handed it to me, and told me she would not be at mile 15(where I would be), but could I wave this and cheer him on. I took it, and made sure to ask what pace he was working on, so I would know when to look for him. He was gunning for a 3:50 finish. Great!

Today after the 3:50 group went by, I could see Andrew in the distance. I got out the sign, and I began waving it, and yelling his name. Soon my co-workers joined in, and cheered him on. He smiled from ear to ear. He got what I told him, and it pumped him up.

Later in the day his mother came in to the store to tell me how much my doing that meant to him. She asked if we still had the sign. We did. She took it home. I somehow think there will be a frame involved.

Andrew finished in 4:20, so slower than he hoped, but I told him this is the benchmark now. He was taking it easy. His mom asked if there is anything she could do for him. I said, "Yes, feed him anything he wants. He earned it." I told her to have him come in with his medal.

I love the marathon, and the people who run it.

Charlie

Early Morning Run

I got up early, as the sun was coming up, and off I went on a short run. I headed down 96th St. and decided I would crank up the speed a bit. This part of the road is a bit rolly, so I wanted to tackle it. Tackle it I did.

Negative splits were the order of the day. I went out in over 16 minutes, and got back in 15:28. My overall time was 31:41. That's a good run.

What was nice was seeing other runners out there soldiering on the in very muggy weather. We have been in August like temps here in Indiana, so running early is the best option if you are headed outside.

My mind was clear today - I am doing this now for Sabrina as well as myself. I have goals both running wise, and fundraising wise. In the end though, I want Sabrina to be proud of her Uncle Charlie.

Charlie

The Road to Portland Has Begun

Four months today I will toe the start line of the 2011 Portland Marathon. I have already started training, and it is going well, as I slowly build my miles and time. I haven't run a marathon since the Indianapolis Monumental in 2009.

My PR is 6:41 at the Monumental. I am gunning for another PR, and feel I can do it. I am getting back into shape, slowly but surely. As of yesterday I have lost 8 lbs, and and am at 236 lbs. I won't be in my ideal shape in October, but I will make great strides towards it. I would like to get close to 225 lbs on marathon day. My eating is much better as I track what I eat. That had helped me a great deal.

As you all know I am also fundraising for NDSS. Please consider donating to this wonderful organization, as they do great work for people with Down Syndrome and their families.

www.crowdrise.com/runningforsabrina

So in addition to the training I will run a 10k in July and a 1/2 marathon in August.

So the road to Portland begins - the journey is going to be great.

Charlie

Moving Along for 4 MIles

When I lamented about my slower 4 miler the other day, I took a look at how I run, and thought about it. Yes, I needed to relax a bit. I did that today for my 4 miler, and it worked. Today's track run was 49:01. I relaxed and I moved better.

I had the music up and going, and I blocked the world out. I really needed to block out the world. Sometimes the day to day grind gets to you. Running, as I have said many times is a chance to get away from the world when you need to.

Nothing is wrong. No drama. I just felt like I needed to block the world out today - mission accomplished.

It's good to run.

Charlie

Running With a Purpose - NDSS

Steve Runner on his great podcast "Phedippidations" has talked for years about running with a noble purpose. Typically this manifests itself with people running for a charity. This is something I rarely do, because when I do it, I want it to be important.

In the past I have done AIDS runs which raised a good amount of money, but I have not taken on fundraising at the marathon level. I toyed with it when I was hoping to run the Boston Marathon this year. Since then I have looked to see where could I make a difference.

Some of you know I have a wonderful, sweet niece named Sabrina. Sabrina is a funny, energetic, delightful ball of energy, and has Down Syndrome. The road is not always easy for person with Down Syndrome. There are many challenges they face at the personal and societal level.

The National Down Syndrome Society(NDSS) works to ensure better lives for people with Down Syndrome and their families. Here is the mission for NDSS:

"The mission of the National Down Syndrome Society is to be the national advocate for the value, acceptance and inclusion of people with Down syndrome.

The National Down Syndrome Society envisions a world in which all people with Down syndrome have the opportunity to enhance their quality of life, realize their life aspirations, and become valued members of welcoming communities."

NDSS' activities include:

• Shaping and advocating for improved public policy, increased public resources and services for people with Down syndrome.

• Working in partnership with our affiliates and other support organizations.

• Improving educational opportunities for individuals with Down syndrome.

• Advancing basic, clinical and applied research.

• Implementing a national public awareness strategy.

In addition to helping people with Down Syndrome, NDSS is a resource and advocate for their families as well. I am in awe of my sister Anne. She has done an outstanding job making sure Sabrina has a happy and loved life.

I want Sabrina to have the chance to accomplish some wonderful things, and have a bright future. I am so glad to know this wonderful organization is out there working on her behalf, breaking down stereotypes, and showing the world how valued people with Down Syndrome are.

By raising money and awareness via running the Portland Marathon, I feel I can do a small part to help Sabrina's future.

I have created a website where you can donate and support NDSS.

www.crowdrise.com/runningforsabrina

All donations are welcome. My goal is $1,000. Whatever you can give is appreciated.

I will keep you all posted how I am doing.

Thanks,

Charlie

4 Miles and Working It

Today was another 4 mile run. My goal was to run 45 minutes t0 50 minutes. Mission accomplished I ran the 4 miles in 50:10. The longer runs are feeling better and better to me.

I ran with music today, listening mostly to dance music. I wanted upbeat, pulsing music to run to, and I felt good running to it.

What I have noticed, and I alluded to it last week, when I try to run fast, I seem to slow a bit. I think it is the way I am trying. I notice I tense a bit, and feel stiffer if I try to "run fast." Again, I have to go back to the easier it feels to run, the better I run, the faster I run.

How do elite athletes do it? How do they make themselves go faster?

Anyone know?

Charlie

When You Think of Time....You Know

As I have been slowly getting back to loving running, one of the things I noticed in my most recent run was, you know when you think about how to go a bit faster, then you know you are getting it back.

Case in point.... I ran 4 miles yesterday. On Sunday I ran 4 miles in 49:49. Off I went. My first mile was 12:32. Ok....I can live with that. My second mile though, I went fast - 11:14. Yes, you read that right - 11:14. So now I am thinking, "Man I could really get moving." Of course what I did was back off the next mile, and pushed too hard in the last mile. I ended with a run of 50:05

That is stil good, but what did I do right and what did I do wrong? On the fast second mile, I relaxed. I let my body go, and I found my stride was so much better. What went wrong was, I backed off too much in mile 3, and in Mile 4, I felt like I was forcing my body to do something it didn't want to do. I was pushing, when I should have relaxed and lengthened my stride.

Lessons are always being learned in running.

Still to me, I was enjoying the work I was doing on the run, and now I know I am getting back mentally where I want to be in my running.

Charlie

Bring on da Heat

No, this will not be about the NBA's Miami Heat. This will be about running in the heat, which is what I did yesterday. It was about 90 degrees as I headed out on a 30-35 minute run. I took a bottle of NUUN with me, and off I went.

The only thing blazing about the run was the sun.

Some things to remember when you run in the heat. First, take it easy. Don't run at full speed. Slow it down. Second, hydrate, hydrate, hydrate. Water, Gatorade, NUUN, whatever the the drink of choice is, drink. You need to replenish often in heat like this. Third, maybe don't do a full long run. Unless you have a marathon in the next month, cut back a little. Heat stroke is not worth being foolish in the heat.

So did I enjoy my 35 minute run? I did. I was just glad to get a couple of miles in.

I have a feeling that was my taste of what is to come this summer run.

Charlie

My Fitness Pal

For the last few weeks Mark and I have been logging what we eat on a website called My Fitness Pal - www.myfitnesspal.com . This is a site where you can keep track of how many calories you take in each day. You track your exercise and weight as well.

It would be easy to just use it as a calorie counter, but it's more than that. It breaks things down by how many nutrients I am taking in. I think that is an important piece of the equation as well.

My "goal" each day is to take in 2030 calories. My personal goal is to come in under that by a bit. I understand I will have days I am over, but by in large I have done a good job keeping the calories in check.

Once you enter a food, it tells you how much calories you have taken in, but you have to be honest with it. Don't just assume you had 1 cup of something. Chances are, you had a couple cups. :-)

I encourage all of you to look at the website.

I find it is helping me stay honest in one I am doing fitness wise.

Charlie

Feels Good

Today was a good day. I ran 4 miles. I headed to the gym, and I ran 4 miles. Why is it after running longer distances does 4 miles seem like nothing. It felt like nothing today. That's a good thing for those who don't know. :-)

This was my first run after the 1/2. I wanted to go 4 miles, and by golly I did it. 49:49 was the time. So how did it feel? Well earlier in the week, my blister from the race broke, so my heel felt a tad tender, but overall I was fine. The gym was pretty empty thanks to the holiday weekend and the Indy 500.

Thoughts during the run? I really did not think of anything. I just focused on what was ahead of my during the run. I wanted to be sure I kept a pretty even pace. I mostly stayed in the 12:30 pace area. The last mile was 13:10. That's ok though.

I want 4 miles to be my pace as I begin my marathon training. I think it is just enough of a run to push, test, and succeed.

Yup - a good run.

Charlie

Recovery Workout

The first run or workout after a race is always a tough one, because you want to do what have been doing, but you know your body is not there yet. I took a cautious approach to yesterday's workout - I cross trained.

My first 10 minutes were on the lateral trainer, a butt kick to start the workout. Then I did some resistance work for about 20 minutes. I did the lat pulldown, seated leg press, and pec work. After that I did about 10 minutes of the elliptical. Finally I walked at a brisk pace for 1/2 a mile.

I worked up a good sweat, and there was no pain in my body. I felt terrific. Now I not only look towards my next run, but also the start of the marathon training.

On to Portland!

Charlie

What Ifs

What ifs are a terrible thing to me. These are the scenarios people play, especially when something life altering happens and the game goes, what if...

There are various versions of this came such as: if only you..., Do you have what would have happened if..., and would coulda shoulda.... I try not to play those games. In the past I have played, "what if I had not spoken to that guy, then I wouldn't have been raped," or "If only I had gone to a different school my life would have been different," and "You should have lost weight sooner."

In my running the big what if is, "What if I hadn't been born with clubbed feet." Would I have run better, faster, stronger? That, and all the others are useless games to me. I have face too much adversity in my life to play them. They wreck your head.

Something I have never written about, and hardly talked about is my hearing. 7-8 years ago I felt a hearing loss in my left ear. It felt like something was closing my hearing, and all I could hear was white noise. I was scared. I scared myself into doing nothing, because I was even more afraid of what may have been.

I think alot of us do that with health issues. We get so scared we don't do what we need to do. Mark has been urging my to get my hearing checked, and today it happened. The results are not good. I have severe hearing loss in my left ear. It is so bad a hearing aid would not do any good.

I was upset by this, but Mark was the one who said, "If only you had gotten this checked sooner..." Mark said nothing wrong, it's just I don't let my head go there. I have dealt with too much in my life to beat myself up over what I could or should have done. Now I deal with life as I know it.

I will speak to a specialist and see what if anything can be done. The audiologist gave me a list of things we could do, and I will read all the material.

My head is going through a lot of things trying to think about what this all means. All the thoughts though are on the future and how to cope. I can't do anything about the past.

Charlie

Geist Half Marathon

Yesterday the sun was bright in the Indiana sky as almost 3,000 runners set off on the Geist Half Marathon. This race runs around the Geist Reservoir in the N.E. Indianapolis area. I was running this with my friend Kris, who I have known since we went to Indiana University. It was her first half marathon.

The course is two things: beautiful and hilly. Beautiful indeed. There are woods, the water, the stately homes. Hilly, oh man there are hills. There is a 933 elevation change on this course. To a guy who has typically run in flat Chicago, and has biomechanical issues, this was a challenge.

There was a challenge of another kind for Kris. At mile 2.5 almost disaster struck. Kris stepped on something. She quickly sat on the side of the road and took her shoe off. She stepped on a nail. Seems there were several on the road. We got a police officer to pull the nail out of the shoe. With her foot ok, we continued.

The first 6 miles of the race was very manageable. It's rolly and gradual. I enjoyed this part of the course. It was also well shaded. Turning at mile 7 the hills really begin. Mile 8 to 9 is the steepest uphill climb. Uphill seems to never end. I power walked those hills. Running was not an option.

Mile 10 to 11 was rolly, and I was walking and running. Mile 11 I smelled something horrible - cigars. There was a group of folks running with beer in hand and cigars in teeth. YUCK! The smell made one woman ill on the course. It just pissed me off. I hate cigar smoke. And really, who smokes and drinks during a half marathon?

I let Kris go at mile 6, and off she went. I was too slow at that point. I had no problem sending her off. I had a problem not being able to use my IPod, due to my sweaty hands.

The latter part of the course was facing the sun. Temps climbed into the 70s. Yes, I was hot. I was also grateful for the wonderful volunteers who provided water and Gatorade. Medical crews were also out with ice cold Gatorade. It was all appreciated.

Mile 11 I felt something on my right heel I had not felt since my very first marathon - a blister. I could feel it burning and growing. I kept going.

Mile 12 and picked it up, and was running a bit more. As I crossed over the water towards the finish line I ran faster. As I got close to the finish line, I heard the crowd chant, "Charlie, Charlie!" Never experienced that before. It was very cool and it pumped me up.

I finished in 3:27. Not a record by any means, but for the hilly nature of the course I'll take it.

I saw Kris at the finish area, and we hugged. I was so proud of her. She finished in 3:03. Very good for a first half.

My thought on the race was it was one of the most beautiful courses I had run, but I would not run it again. The hills were too much

Charlie

So How Am I Feeling?

When I last posted I was hurting. Happy to say I am feeling pretty good. I have had some rest, anti-inflammatories, and ice. Today I cross trained. I think I am ready for the Geist Half on Saturday. I had been nervous about how I was feeling. Now I feel a bit more confident for the race.

Today's cross train was 15 minutes of the lateral trainer, 15 minutes of the elliptical walking towards a 7.0 incline, I did 3 sets of pec flys and 3 sets of leg presses. I felt very good after the workout. More needs to be done between now and October, but this is encouraging to me.

The half marathon will be a good starting point for me. It will give me a baseline for what I need to do this summer, as I head to the marathon in the Fall.

Time to focus on Saturday's race.

Charlie