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James SooHoo

September 2010

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NATIONAL PREMATURITY AWARENESS DAY EVENTS (NYC ON TUESDAY, NOVEMBER 15).

Nov 10, 2005 01:49pm (EST)

Hi everyone,

Yesterday, I wrote about all of the great stuff happening around the country during Prematurity Awareness Day (Tuesday, November 15). We also have a national Prematurity Awareness Day event which this year in New York City. As I’ve mentioned, the first SHARE Union is incorporated into the day. Here is what we will be all doing:

Early Tuesday morning, two busses will be picking up our SHARE moms and dads along with a host of other volunteers and staff. I hope this uploading picture thing works for me again….because the busses which will be driving all around New York City are completely decorated for PAD.

We will all be taken to CBS’s early morning show, where our president, Dr. Jennifer Howse will be interviewed. The rest of us, dressed in pink and blue, will be in all of the commercial break and weather cutaways. Tune into see everyone! And pray for nice sunny weather. It’s a beautiful 60 degrees here today.

From there, we will be going to Brooklyn’s Borough Hall to meet up with the borough officials for a press conference. Among the highlights will be the proclamation of Prematurity Awareness Day in Brooklyn and some words by Jamie Anderson (our national ambassador family).

After Brooklyn, some of our SHARE moms and dads will be breaking off to speak on the Dr. Joy Browne show. Dr. Joy’s show on WOR and often simulcast on the Discovery Health Channel has over 9 million listeners a day! Along with our SHARE moms and dads, we’ll also have some celebrity call-ins to the show. Tune in if you can!

The other SHARE moms and dads will be continuing on to St. Mary’s hospital in Queens for another press conference. Dr. Edwin Simpser, Chief Medical Officer will welcome us and talk about the many outcomes of premature birth that they see and treat at St. Mary’s. Dr. Louis Sullivan will talk about the costs and consequences of prematurity.

The busses will then depart for the Women’s Health Center in Harlem. For those that don’t know, African-American women are almost twice as likely to have a preterm delivery as their Caucasian counterparts. Dr. Sam Daniel will talk about the importance of the WHC in meeting health needs of pregnant women in the community. A grant will be given to WHC and a special guest celebrity will be speak and close the day.

Whew! It should be an amazing day full of celebrities, some of the most powerful business leaders in NY and medical practitioners at the tops of their field. And, of course, all of our SHARE moms and dads. Many of whom will be with us in person; the rest of you, I’m sure, in spirit.

PADBus1Side

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PREMATURITY AWARENESS DAY ACTIVITIES ACROSS THE NATION...

Nov 09, 2005 02:01pm (EST)

Hi everyone,

I know I was supposed to do write about what is going on at the national Prematurity Awareness Day (PAD) event here in New York City. I will. We just finalized all of the details...

but before I do that...I just want to say that this is by far and away already the biggest, most exciting PAD in March of Dimes history.

To date we know of about 120 lightings, THREE TIMES as many as 2004, involving hundreds of communities in 26 states, the District of Columbia, and Puerto Rico. From beyond coast-to-coast--Honolulu to San Juan, Seattle to Miami, Boston to Portland, OR. . . .banks, bridges, boats. . . .malls, hospitals, sports arenas and halls of fame. . .new skyscrapers and historic county courthouses are joining two Governor's mansions--in Texas and Maryland and SIX State Capitol Domes--in Nebraska, Oklahoma, Nevada, Wyoming, Minnesota, and Wisconsin in the pink & blue tribute. In addition, the entire skyline profiles of Philadelphia and Chicago as well as the always- spectacular Niagara Falls are glowing pink & blue. And in 2005, for the first time, messages of hope for premature babies are sky-rocketing as the Saturn V at the U.S. Space & Rocket Center in Huntsville, AL is transformed in Prematurity Awareness Day, November 15th.

There will be MORE THAN a dozen gatherings such as youth rallies, NICU reunions and candlelight vigils, including roll call in several cities in Indiana, Seattle' s 9-block presence symbolizing the goal of giving every baby 9 months, and expectant moms gathered around the rocket in Huntsville. The First Ladies of Maine and West Virginia are active participants in activities in their respective states as well.

In more than two dozen states, Summits will put March of Dimes leadership on the issue of prematurity at the forefront. Governors of 10 states have proclaimed Prematurity Awareness Day (GA, HI, IL, IN, OR, NE, WA, WY, VA, WI) as well as dozens of municipal and county officials.

In MORE THAN three dozen states there are displays in hospitals, libraries, and schools plus arenas in Cleveland and Denver and multiple sites in Rhode Island, Delaware, Indiana and Hawaii. And in Ft. Myers, FL, at the Health Park Atrium, you can guess how many pink & blue jelly beans are in the jar--it's the number of premature babies born in FL every year.

Fun and games are devoted to the March of Dimes at-- Disney Live with Winnie the Pooh in Minneapolis Buffalo Sabres Oklahoma Blazers Colorado Avalanche Cleveland Cavaliers Seattle Seahawks and both the Women's Basketball Hall of Fame in Knoxville, TN and the Men's Basketball Hall of Fame in Springfield, MA are being lit pink & blue.

You can even EAT in pink & blue--donuts and cookies in Indiana and Pennsylvania plus support from Outback and Wendy's and in Winooski, VT, the NICU Family Reunion is being treated to special pink & blue Ben & Jerry's ice cream.

In addition there are numerous businesses and schools "making the fashion statement that saves babies" by wearing Pink & Blue Jeans.

There will be news conferences, interviews and feature stories on dozens of media outlets across the country, and in Virginia Beach, Minneapolis, South Carolina, Puerto Rico and Indiana, on-air personalities will be sporting pink & blue as they report the news on Prematurity Awareness Day, Nov. 15th.

And, of course, the first ever SHARE Union and coinciding NYC PAD activities.

It's amazing how much is all going on right now. I'm very excited about next week, as I hope you are all too. If you're not going to be with us in NY....look for what's going on around you.

- James

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FINDING YOUR NICHE (NOVEMBER 14, 2005)

Nov 03, 2005 03:18pm (EST)

Hey everyone!

Everything is now set for the first annual SHARE Union/Prematurity Awareness Day (November 14 and 15). As excited as you are to meet each other, we (March of Dimes staff) are just as excited to get to know you too!

Here are the details for Monday, November 14. It was designed by Michele Reeves and the rest of the committee and reflects what either they wanted to know more about or what they learned in San Diego and wanted to share with all of you. Monday is called “Finding Your NICHE” and is an all day seminar on what the March of Dimes is, where we are going and how you can get involved.

The day starts at 9:00 am here at the national office of the March of Dimes. We’ll register, share some coffee and then Frank Lynch our Vice President of National and Field Operations will take you on a tour of the national office. It’s a great overview of how all of the pieces fit together from our communications to our global programs departments.

After the tour, we’ll start the “Finding Your NICHE” program…

“N” – “navigating nationally” David Rose our national archivist and historian will do an hour long presentation on the history of the March of Dimes from polio to prematurity. He will walk you through our founding by President Franklin Delano Roosevelt to Jonas Salk and the polio vaccine to surfactant to our current prematurity campaign. The March of Dimes history is rich and you all (everyone here on this site) are now a vital part of this tradition.

“I” – “inspiring intelligently” We will have two speakers for this presentation both of whom you have probably seen around the site: Patty Goldman (Director of E-Business) and Judi Gooding (Director of NICU Inititatives and Chapter Program Strategies). This is all about SHARE. Patty will talk about the history of the site, how to navigate around and the future enhancements including a possible spanish language site. Judi will talk about supporting others in the community as well as address challenges you may have encountered.

We’ll then break for lunch and time for a group photograph. We have a special guest host for the lunch. All of the behind the scenes team will also be there with you (including me). And it will, of course, be a relaxed time that everyone can chat and finally put faces to names.

“C” – “caring collectively” After lunch, Judi will be coming back along with Liza Cooper (Director of NICU Family Support). They will talk about the NICU Family Support project as well as how you can get involved in your local NICU and support other families.

“H” – “helping heroically” I’m very excited that Dr. Marina Weiss (our Senior Vice President of Public Policy and Government Affairs) will be coming up from Washington, DC to do this presentation. She’ll talk about advocacy on the local, state and national level. How you can find out issues that relate to prematurity and NICUs. How to write effective letters, speaking points when meeting legislators and then how to make the most out of your 2 minute interview.

“E” – “executing effectively” This will be led by me! Mission families, like yours, have completely re-energized every aspect of the organization. It started with the Family Teams who came out in the thousands for WalkAmerica this year. We’ll talk about what mission families have been doing across the country since then. We’ll also summarize the day, take that knowledge and then discuss how we can execute it effectively (whether in our local communities or simply on shareyourstory.)

Each of the sessions are designed to be interactive with plenty of time for questions and answers. We want to share all of the great initiatives happening at the March of Dimes. We also want to hear from you, how we can make them better. Your voices are powerful!

At the end of the day, a bus will take everyone over to one of our local hotels for a reception (which includes food and drinks) and the first ever SHARE Remembrance Ceremony.

The ceremony is being put together by our wonderful community member Sharlene and it will be a time to honor our children. There will be music and songs performed by two of our SHARE moms that will be backdropped with a presentation of survivors and then of those who have passed. If you want to have your child added to the presentation, please see the folder under Prematurity Awareness Day, first ever share remembrance ceremony.

As you can see the day is full of interesting, fun and meaningful activities. We are again all really excited to have you with us. This is turning out to be the biggest, most successful Prematurity Awareness Day in our history. And you are all a major part of that!

Best,

- James

ps . tomorrow, I’ll blog about what is happening on day two (November 15)

Posted by James SooHoo | Comments: (7) | Permalink

INTRODUCING JULIEN WALTER SOOHOO

Oct 25, 2005 10:36am (EST)

First, we would love to have you come to the first annual SHARE Union next month. Space is filling fast so please let us know ASAP if you are interested in joining us.

Second, our Office of Governmental Affairs has asked for our help with the Preemie Act. I’ll talk more about this later but they everyone to contact their senators and representatives and urge them to cosponsor the PREEMIE Act. Look for Emil’s posting today (under Advocacy)

Third, I talked to my mother last night. She, of course, knows that I work at the March of Dimes, but doesn’t really know what I do here. I sent her to this site yesterday and she’s supposed to check back today to see pictures of her first grandchild. That said….HI MOM!

That said….I want to introduce you all to Julien Walter SooHoo. I hope his pictures come out. I’m not really computer literate. If they do, you are looking at pictures of little Julien at 21 weeks. One of them is a typical sonogram photo. It’s a profile of him laying on his back. The other is a 3D photo.

Right before we left to do this sonogram, we were sitting in bed. I was watching SportsCenter. Kristen was sitting next to me counting the weeks she was pregnant with her fingers. An hour later, we were watching 3D images of little Julien. He rubbed his head, then rubbed his belly. And then, just like his mother, he started counting with his fingers. I hope his calculations are correct, because he isn’t due until February 16,

I have been driving my wife crazy ever since. I worry all of the time that she’s okay, that she’s not working too hard and overdoing it (she’s an emergency medicine physician). I worry about baby. I ask Kristen a gazillion times a day if he’s moved. Yikes, if I’m this nutty about their safety now and he’s not even born…I’m scared to think of the anxiety of the next 25 years or so.

Which, then, brings me back to my own mother. Hey mom, if you’re reading this, thanks so much for a lifetime of watching out for me. I know there have been times when I’ve put you through more stress and anxiety than most mother’s should have to go through. I hope you know how much I love and appreciate you.

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JOIN US FOR THE FIRST EVER, ANNUAL SHARE UNION!

Oct 20, 2005 03:49pm (EST)

Speaking of Prematurity Awareness Day (see my last blog), I also want to talk about the first ever annual SHARE Union in New York on November 14 and 15.

Our committee of shareyourstory moms have been working really hard to put together a beautiful program that coincides with national Prematurity Awareness Day activities. The first day will be a day of learning all about the March of Dimes, what we’re doing and how you can get involved. There are interesting speakers lined up who will talk about history of the March of Dimes and projects we’re currently working on. Speakers include some of the behind the scenes shareyourstory staff like Judi, Liza, Pam and Patty. We’ll also take you on a tour of the national office. Yes, one of the stops includes my office. I’ll make sure I clean it up and decorate it for the occasion. Okay maybe my office isn’t a highlight but I’m personally really excited about the whole day and what they have planned for the evening (which includes a reception just for you). It should all prove to be worth the trip.

Day two, will be spent participating in the national Prematurity Awareness Day activities in New York City. The agenda for this day has been planned by the national office of the March of Dimes. I don’t want to tell you too much, but the day will include media events on national television and radio. Essentially, it will be a full day of getting the word out about the crisis of prematurity! We’re still fine tuning the details but I’m also really excited about the agenda.

There is no cost to participate in any of these events or the reception. Transportation, however, to and from New York and hotel costs will be up to you. The March of Dimes has negotiated a discount price for Share Your Story members at a hotel here in White Plains and we will cover transportation to and from New York City for Prematurity Awareness Day activities as well as providing you with meals.

I really hope you can join us! What makes all of this particularly special for me would be finally getting to meet all of the people whose posts I’ve read whether you’ve been on the site for the last year or are brand new to the site. Or, even if you never post but just read and have been touched with what others are writing. As I’ve said many times before, this is the most special, warm, inspiring group of people that I’ve ever been associated with.

If you are interested in joining us, please fill out the form on the homepage. We would love to have you for the whole program or just a part of it . if you schedule doesn’t permit you joining us for everything

Very best,

- James

ps. See Michele, I’m still in the office typing away!

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WHAT CAN YOU DO FOR PINK AND BLUE?

Oct 20, 2005 02:33pm (EST)

Hi everyone,

I’ve been out of the office a lot lately…and haven’t had a chance to blog. I’m going to rectify that right now and write not just one entry today but two!

First, I wanted to give you all some news on some great stuff that’s going on around the country right now and through the month of November.

If you don’t already know, November is Prematurity Awareness Month. March of Dimes staff and volunteers around the country will be making a concerted effort to raise the public awareness of the escalating crisis of premature birth.

To kick off Prematurity Awareness Month, a three-page photo/editorial spread is in the Nov. 8 issue of Family Circle magazine, on newsstands now, is devoted to March of Dimes Prematurity Awareness Month. The spread features six March of Dimes celebrity volunteers and their children outfitted in pink and blue, the colors of the Prematurity Campaign.

There is also a six-page photo spread in the November issue of Parents Magazine devoted to March of Dimes Prematurity Awareness Month. The spread features premature babies outfitted in pink and blue, the colors of the March of Dimes Prematurity Campaign. In addition, Parents is donating 50 percent (or $6 per issue) from all yearly subscription renewals or new subscriptions to the March of Dimes. Subscriptions are available by calling 1-800-727-3682 and by mentioning code JMODPMM. The offer expires Jan. 31, 2006.

Buildings and landmarks will be lit in pink and blue around the country on November 15 (Prematurity Awareness Day). Among them, for the second straight year Niagra Falls will be backlit in pink and blue as a tie-in with the Buffalo Sabres celebration of pink and blue night. News personalities in many cities will be wearing pink and blue on the same day.

We have events planned in every state including rallies and summits. If you are interested in getting involved locally, please visit marchofdimes.com or contact your local chapter.

Very best,

- James

ps. I just learned today that Albert Einstein was born prematurely. True.

Posted by James SooHoo | Comments: (6) | Permalink

SAN DIEGO

Sep 23, 2005 07:37am (EST)

As I mentioned last week, we held our Volunteer Leadership Conference (VLC) in San Diego last week to dedicate the north building of the Salk Institute to the March of Dimes, highlight important research and programs we are implementing, recognize our top volunteers, appreciate individual and team fundraising efforts, and also to brainstorm and share ideas. The largest March of Dimes conference ever, the 2005 VLC was attended by almost 1,100 corporate leaders, top volunteers, doctors, researchers and key March of Dimes staff. Among this group, were five of our SHARE moms (Donna, Melissa, Darcy, Michelle and Karri).

Here are some snippets and random thoughts....

An hour into the conference, we scheduled our SHARE moms to read a sampling of their own posts from the site. They didn't know which posts had been chosen and didn't have a chance to rehearse. In fact, I only asked them to do it a day before.

Donna, Michelle, Darcy and Karri went first and read their's beautifully. And then we ended with Melissa. We asked Melissa to read something she had written about the agonizing final moments of son Alex, who had been born prematurely.

Watching Melissa was one of the most poignant moments of my life. She was up there alone. A faint spotlight overhead. Her hands trembled, she cried, she paused, continued, cried again. It's hard to describe the energy of over 1000 people who were listening to her every word, who cried with her and at the same wanted to run up from their seats to hug her while she read.

Thank you, Melissa, so much for sharing your story. While you seemed alone up there, you made others in the audience in the same position feel much less alone. You also underscored the importance of everything that would follow over the next few days.

I'm wishing right now that I could give everyone an overview of all of the amazing presentations and workshops that were taking place. Unfortunately, I can't. I spent the next three days presenting my own roundtables and workshops.

Karri co-facilitated workshops for our staff on making WalkAmerica more family friendly and more mission oriented. More people signed up for and attended these workshops than any other. If you notice changes at your walksites next year, think of Karri. She made a profound impact on the staff.

During her state of the organization address, Dr. Jennifer Howse, the president of the March of Dimes, highlighted five of the most important initiatives the organization has undertaken this year. Two of these were Family Teams and SHARE. This is all about all of you! These two initiatives are entirely volunteer developed and driven!

For the first time ever, we recognized our top Family Teams during the WalkAmerica awards.

Melanie Sweeney won a national volunteer of the year award. Congratulations Melanie!

Melanie's 9-year old son Emmitt wrote and gave a speech about what it means to him to be a year-round March of Dimes volunteer and got a standing ovation.

I'm sure that Darcy makes everyone's A-list to parties. Her boundless energy is only matched by her empathy.

These thoughts and snippets really are random. You should see my desk.

As I said above, the Salk Institute dedicated the north building to the March of Dimes. I will try to get a picture up today.

Donna is quiet, thoughtful. A beautiful soul.

I wish I could have invited everyone from SHARE to come with me. You are all so important to me.

The last workshop of the last day was co-facilitated by Michelle and Nancy. It was about March of Dimes online outreach sites and focused on nacersano.org (our spanish language website) and, of course, SHARE. All of our SHARE moms talked about how they found the site and why. We also had some discussion about local staff involvement on the site (more on this in my next blog). In the evaluations, one person said that it was the highlight of the entire conference for him. Another said that it was best workshop he had ever attended. Thanks Michelle and Nancy!

Marla, if you do get on SHARE and read this, I can't thank you enough. I couldn't have dreamed up a better volunteer/staff presentation team than we were in San Diego. You rock!

I'm starting to think that I could go on with this for pages and pages.

So much happened, so much great work accomplished at this conference that it would literally take me four days to write it all down. I haven't had a chance yet to read the blogs of the five moms and Nancy...but I will now. I'm sure they will have already filled in some of the blanks!

Posted by James SooHoo | Comments: (8) | Permalink

UPDATES

Sep 12, 2005 07:53am (EST)

Hi everyone,

As one of my co-workers mentioned to me on Friday, what’s the point of having a blog if you aren’t going to write anything. While I have been following everything going on in the community, I guess I needed that friendly kick in the pants.

First and foremost, I want to say how amazing it is that so many of you put together care packages for the hurricane victims. I was in Atlanta during the hurricane and saw the first refugees arriving from the gulf coast. They were coming in on caravans of busses from the veteran hospitals. Even through many of them were connected to oxygen tanks and various equipment, they were the lucky ones, they were the ones well enough to travel. There were still so many left behind. It means so much that you all gave of your time, money and effort to help people you will never meet. I am so proud to “know” all of you and be a part of this community.

Second, since my blog is technically entitled “behind the scenes with James,” I thought it would be appropriate to mention two of my co-workers: Judi Gooding and Liza Cooper. They are both working around the clock on the hurricane relief. Liza went down to Baton Rouge, Louisiana to help out in the NICU and the shelters and Judi is coordinating March of Dimes efforts nationally. They are two of the most angelic people I have ever met and both are personal heroes of mine. If you ever have the chance to meet them, you will know instantly that they would hate that I’m writing about them now and would say that they are just doing their jobs. They don’t, however, have the chance to ever read my blogs so I can say what I want and I just want to say that they always go so above and beyond, I am forever humbled in their presence.

Finally, I also want to let you know that Nancy and a couple of our community members (Michelle, Donna, Melissa, Karri and Darcy) will be speaking about the importance of SHARE in San Diego this week. The audience of almost 1,100 people include some of our most important volunteers from around the country, business leaders, doctors, researchers and key March of Dimes staff. I will keep you posted from San Diego this week.

Thanks again for all you are doing for the families in the gulf coast. I know that it is very much appreciated!

Very best,

- James

Ps. If you haven’t had a chance, take a look at Liza’s blog from Baton Rouge.

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MGB (MINI GUMMY BEAR)

Aug 15, 2005 09:53am (EST)

Thanks for all of the messages! We saw our (aptly named by Melissa) “Mini Gummy Bear” last week. Sorry it took so long to share this. It took me a little while to figure out how I truly felt about it all. When it was just a little circle it was very easy to be excited. When it grew into something that looked like a stryrofoam peanut, I started to get nervous about the future. And then in one short month, we suddenly had a little body. He/she has eyes and a mouth. And he/she was moving his/her arms and legs around like a fish in a bowl. In fact, my wife who is a physician and conducted many sonograms, said it was the most active little baby she’s ever seen at this stage.

And then it hit me that this was real. I had one of those time/space altering, “life flashing before you” kind of moments. My life would change forever. I can say now that I’m excited that my life will change. At the time, all I could think about was that it would change. Right now, I’m counting down the days to February with excitement. At the time, I was thinking that this was moving too fast.

All of that said, thanks for all of your support and excitement for us. We really appreciate it. Kristen is doing well. She has already gained a much needed 12 pounds. She’s no longer feeling nauseous. Right now, she’s just tired all of the time. I’m going to have her do a guest blog for me in the next week or two. I just wanted to wait until she stopped being cranky.

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THE POWER OF VOLUNTEERS

Aug 08, 2005 08:56am (EST)

Honestly, I can't believe SHARE is only 1. It seems like Darcy, Karri, Sharlene, Melissa, Brenda, Donna, Hailey, Nancy and all of my other friends on SHARE have been a part of my life for so much longer.

I still remember when the was just an idea that Marc Sirkin was tossing around. Marc sat in the office next to mine and would talk about it from time to time. I remember then, that I kind of brushed him off with a little "okay, Marc, you go do that" and didn't think much about it one way or the other. At the time, I was putting together the framework for the Family Team program, so one would have thought I would have listened to him more. Okay, no one has ever accused me of being the brightest star in the sky.

And, now, one year later SHARE and Family Teams are two of the top things the organization is most proud of from 2004/2005. That said, and Marc would agree with this, neither would have happened without the guidance and support from our volunteers. For me, Melanie Sweeney worked tirelessly around the clock writing Family Team materials and helping me roll the whole program out across the country. Likewise for Marc, Michelle Reeves was there every step of the way providing her input, suggestions, changes, guidance. Without Melanie there would be no Family Team program; without Michelle there would be no SHARE. Both radically changed the entire organization for the better.

The power of volunteers is amazing. You all, everyone here at SHARE, have done so much to get the word out, to help us fund important programs and research, to help us save babies and their parents from the sometimes devastating effects of prematurity. Thank you so much.

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