This and That

Quite a bit to talk about.

I didn't run today, but that old nasty friend the irritate IT Band was visiting me. So I made sure I took it easy. I also worked on it at work with "The Stick." If you haven't used this product, it's a good one to have. It is a stick with rolly bars on it to work the muscles over and over. It isn't as painful as a foam roller, but it works.

My sister Anne visited over the weekend, and she brought Sabrina. I will be sure to share pictures soon. It was a nice visit. Sabrina is such a sweet girl. Of course, now then she is a bit stubborn, but what 8 year old isn't.

Her visit showed me a lot of things. First, I am even more determined to hit my $1000 goal for NDSS. The work they do is truly going to help her in the future. Second, I am in awe of Anne. She has a lot of patience and love. Being a single parent of a child with Down Syndrome can't be easy. There are challenges I cannot even begin to imagine. I know though Anne's resolve is strong. Sabrina has a wonderful mom in my sister.

I did manage to get in a 5k run this week. I felt good running through the cemetery near me. Of course now I am trying to figure what I did to the IT Band.

My big news came this week. I have been promoted at my store. I am now the manager. I can not tell you how thrilled I am that the upper managers and the owners have faith in my to make a go of this store. I have, in essence been in place for 6 months, but more as a manager in training. My formal training is over, now I get to put into practice what I have been toying with.

My friends in Chicago will understand how much this means to me, especially after my experience there.

So the week is a good one. Now I just have to work on this IT Band.

Charlie

Running for the Week

While I posted quite a bit on NDSS this week. I did run some. I ran 4 days, and I typically ran 2- 2.88 miles. I am a bit behind in the training, but this schedule just did not allow for longer runs. So my goal next week is to run longer runs.

Still I am glad I got to run. Today was just too hot. My goal was to run an hour at the track, but the weather was hot and so was the track. I really had nothing in me when I finished 2 miles. It was just hot. Other people on the track were wilting - never good.

Now I focus on next week's runs. Longer and stronger.

Charlie

NDSS Interview Part 5

Today is the last part of my interview with Jordana Stern of NDSS. Over the last week, we have learned some of what the National Down Syndrome Society does for people with Down Syndrome and their families. The answers to my questions only scratch the surface of what this organization does.

In today's post, Stern talks about how NDSS works with over 300 affiliate organizations around the country.

5) How do you help affiliate organizations around the country?

NDSS is affiliated with over 350 organizations that provide an array of benefits to help better service the Down syndrome community in their regions. We view our affiliates as equal partners working on behalf of individuals with Down syndrome, their families, and the professionals involved with their overall welfare. Services and programs at an affiliate may include: new parent support and education, family meetings, recreational activities, lending libraries, Helplines, regional conferences, training for medical professionals and educators, and Buddy Walks®. Some affiliates are large operations and some are small neighborhood groups; they perform a variety of services, though nearly all have a parent support component.

NDSS links its affiliates to the greater Down syndrome community. New and expectant parents and members of local communities are referred to local affiliates through our toll-free Helpline, email service and www.ndss.org, the most accessed and comprehensive Down syndrome website on the Internet.

Affiliates receive NDSS educational materials, NDSS bulletins, NDSS National Policy Center Action Alerts, affiliate messages, and are invited to join our monthly affiliate webinars. Affiliate webinars are hour-long presentations conducted online by experts on a variety of topics related to Down syndrome. Past affiliate webinar topics have been: Respiratory Concerns in Children with Down Syndrome, Sibling Issues: What Your Other Children Without Down Syndrome are Thinking, Universal Design for Learning, and the NDSS My Great Story Public Awareness Campaign. In addition to the presentation, the webinars include an open Q&A with the presenter.

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/runningforsabina

Charlie

NDSS Interview Part 4

Today is the 4th in a series of questions I asked Jordana Stern of NDSS to address. Today Stern talks about one important resource NDSS provides - the NDSS Helpline

4) What is the NDSS Helpline? Who is it for, and how does it help people?

Through its toll-free helpline (800-221-4602) and email service (info@ndss.org), NDSS receives more than 10,000 requests a year for information on Down syndrome. The professionally staffed Goodwin Family Information and Referral Center responds to questions from parents, professionals, self-advocates and other interested individuals.

A trained NDSS representative is available to respond to email inquiries and phone calls between the hours of 9am and 5pm ET, Monday - Friday. The Goodwin Family Information and Referral Center is supported by a translation service that can be accessed in over 150 languages and publishes brochures and a new parent packet in English and Spanish.

www.ndss.org

www.crowdrise.com/runningforsabrina

Charlie

NDSS Interview Part 3

This week has certainly been an education on this blog. This week's focus is on the National Down Syndrome Society(NDSS). As you all know I am raising money for this organization in honor of my niece Sabrina.

Jordana Stern, Communications Associate for NDSS has answered a series of questions I asked about the organization and how they help people with Down Syndrome. Yesterday she broke down the different programs they focus on. Today we are looking at one of their most visible programs - "My Great Story."

3) What is My Great Story?

The My Great Story (MGS) public awareness campaign seeks to fuel a new way of thinking about people with Down syndrome by celebrating their accomplishments and achievements. Through sharing stories written by self-advocates, as well as their family members, friends, colleagues, teachers and many others, the campaign sheds light on the abilities of people with Down syndrome. The MGS online storybook has several sections in which participants can choose to share their stories, including family, friends, hobbies, education, travel, sports and several others. A holiday section rotates throughout the year and features stories that are relevant to the month or season. All are invited to join the campaign by reading the stories in the collection, and commenting and voting on their favorite submissions.

The MGS campaign was created pro-bono by NY based Ad Agency, Pedone. After 14 months of market analysis the Pedone team developed the MGS campaign theme in an effort to educate both those with a personal connection to someone with Down syndrome and the general public about the advancements and achievements being made by people with Down syndrome. The online story book was developed by CT based Interactive Agency York and Chapel, who spent over 12 months developing the user friendly technology, sophisticated design and esthetics. Two of the stories in the collection, The Public Speaker, by self-advocate Sara Wolff and The Traveler, by self-advocate Sujeet Desai, were made into print ads for the campaign that were shot by photographer Zachary Scott. TV Hosts Meredith Vieira and Nancy O’Dell, Actor John C. McGinley and Actor and NDSS Goodwill Ambassador Chris Burke joined in as well by staring in 30 second PSAs for the campaign.

The MGS campaign has garnered strong visibility in a profound timeframe. To date, over $6 million has been donated in national and regional ad space and services. The campaign has been seen by over 225 million people across the country and featured in media outlets such as Allure, Fortune, Glamour, Newsweek, Self, Time, USA Today, Vogue and Wired, among other noteworthy outlets. The My Great Story campaign has attracted other types of media as well, including placements in airports, bars, checkout counters and hospital patient and waiting rooms.

For more information about My Great Story and NDSS, please go to www.ndss.org

Please consider a donation towards my $1,000 goal. At this writing, I am over 40% of the way there.

Charlie

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