Sharing stories and spreading awareness

March 21, 2014 marks the 9th anniversary of World Down Syndrome Day. We are grateful every day to have this platform at HelpYourHero.org to help children and their families, and days like today are exactly why we do this work – to empower and enable children with medical conditions to communicate, in whatever way they can, and share their stories.

Part of this means we work to inform and spread awareness. We all have our experiences that make us who we are, and sometimes we need a little help to understand the experiences of others, sometimes even those in our own families.

So for this reason, we embrace the many days of awareness throughout the year like today, and we hope you’ll join us in spreading the word as we join in with the local, national and international conversations.

According to the website worlddownsyndromeday.org (WDSD), Down Syndrome International is focusing on:

“Health and Wellbeing - Access and Equality for All”

All people with Down syndrome have the right to access healthcare when required on an equal basis with others without discrimination and with proper assessment of the specific health needs of the individual. We will be highlighting that:

1. Having Down syndrome does not make a person unhealthy.
2. Down syndrome is a genetic condition, not an illness.
3. People with Down syndrome may have health issues throughout their lives, just like everyone else and they should have access to healthcare on an equal basis with others.
4. There are specific known health issues which may affect people with Down syndrome, for which accurate, evidence based information is available.
5. Health professionals should be aware of these specific issues when treating a person with Down syndrome.
6. Health professionals should not discriminate against people with Down syndrome by:

• a. refusing to treat them
• b. blaming health issues on Down syndrome in general
• c. or considering only specific known health issues which may affect people with Down syndrome.

 Best,
T. Bartlett
PR Manager & Story Writer

How words can affect us...

I have been amazed for years by author Masaru Emoto’s studies and experiments with water. Emoto wrote several volumes in a work entitled Messages from Water, and it is a must-read.

I have always believed that words are very powerful and Emoto’s work is helping to prove this. In this study, they use examples of positive words like Love and Appreciation and negative words like Adolph Hitler and they go on to show the effects that the words had on water. You can see more information about the work and photographs here.

My sister Tracy began to surround herself with positive words such as Believe in 1991 when she was received the grim diagnosis of her brain cancer. She knew it was not good news, but she believed that she needed to stay positive and surround herself with positive words as well as positive people. Her 21-year journey against all odds even ended with the words "In Remembrance of me…Don’t Stop Believin’.”

So with this in mind - Tracy’s inspiring journey with important and positive words and the findings of Emoto’s studies - when we created our line of motivational merchandise, we knew that positive words were a must, and this is why you see the words Believe and Hero peppered throughout our merchandise. If Emoto’s studies and findings are accurate, then wearing some positive words can be very healing. After all, our body is made up of about 60% water.

Check out our motivational merchandise for yourself or send the merchandise directly to someone else (with a gift message which you can include) that may need a positive message reminder.

Today I am sporting my Don’t Stop Believin’ Sweatshirt just so I can feel the effects of these positive words.

All the best, always,
Smiles,
Jackie 

Paying It Forward One Superhero at a Time

We get really excited every time we get to connect with various media outlets. We are incredibly thankful and humbled when we get to see HelpYourHero.org featured on CNN, USAToday.com, or WomenYouShouldKnow.net. But there’s an interesting thing that happens when the dust settles between stories. We instantly begin brainstorming about the next media project because we know we haven’t reached every Superhero that needs us, and we’ll never stop working toward this goal.

It’s always been one of our goals at HelpYourHero.org to get international attention for our unique and free services because we know that there are Superheroes everywhere around the world. So today we are really excited to be one step closer and on our way to getting some of this international attention with the book Your Unique Pay-It-Forward Story: Passing on Experiences of Giving.

The book, developed by Gideon Nelsen of Pifexperience.org, is designed to inspire and increase awareness of one another. A collection of pay-it-forward stories will be featured in the book, and Jackie’s and Tracy’s inspirational story and how HelpYourHero.org came to be will be one of them! There will also be a story by Catherine Ryan Hyde, author of Pay It Forward from which the popular movie was based on, will also be featured in this book.

The book is still in the early stages of development, so we don’t yet have a timeline for publication and we don’t know where it can be purchased. However, as we learn more about it, we will update you here and on our social media pages. I gave Jackie the news last week and she wanted to pass along some of her thoughts about it:

Upon receiving this news, I am just elated to know that this awesome book Gideon is creating and is going to be published internationally will helps us to reach even more families that can benefit from our services. Tracy asked the question in 1991 about those that have done so much for her and our family: “How are we going to pay all these people back, Jack?”  Well, it is now being answered in a big way by being honored as one of the stories in this book.

We look forward to sharing our story with the world, but it is our profound hope that by sharing our story and getting the word out about HelpYourHero.org, Superheroes around the world will feel empowered by it and therefore be able to share their stories, too.

Best,

T. Bartlett

PR Manager and Story Writer

Story-Telling through the Facebook Cover Image

All Facebook timelines, for people as well as pages, use a large header image known as the "cover photo". While there are some rules about what you can and can't display in this prime real estate, the space is essentially a billboard, and with one quick glance, your timeline visitors can get a real sense of who you might be and what you might be going through.

If you've set up a Facebook page for your Superhero child, perhaps as a way to help keep in touch with long-distance family, then you no doubt encountered the cover image dilemma. What image do I put here that lets people know what this page is about. The natural fall-back is an image of your child, but let's face it- that may not be the most flattering or telling image to plaster at the top of your timeline. For starters, it's potentially embarrassing for your child, but also most candid photos are, in general, just not good photos. Blown up to the dimensions of the Facebook cover space, most amateur photography is going to look a bit blah.

But let me offer this idea as an alternative: how about using the cover image on your child's page the same way most people do on their personal timelines? Save the photo of your child for the profile image, and certainly share them through your timeline, but use the cover image to share a deeper understanding of what's going on with your child's life.

We've had a pretty rough winter, and I know most of us are pretty jazzed about spring. Is your child? Are they getting excited about getting out of the house, or finally being able to get the windows open and hear the birds? Share their hopes with an image that evokes the season.

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Or maybe your Superhero is getting anxious to see the new Captain America movie (I know I am), and is hoping to have the chance. Maybe it's all he's talking about right now. Let your followers know it's on his mind with an image of the First Avenger.

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Perhaps your daughter has recently been a bit down in the dumps, and you've been using rainbows to cheer her up. Plant the idea in people's minds with a rainbow-themed cover.

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Or maybe, like my son, your child is in love with trains, and likes just about anything having to do with old-fashioned locomotives. A rotating gallery of train cover images that fit the season, your child's mood, or somehow tie into a current milestone or life event can tell a story without ever needing a post in the timeline.

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Think about the ways you can express the events, feelings, hobbies and things that matter to your child through the first image people see on your child's timeline. Use your own images if it makes sense, but think about how the image is composed, and whether it really is a good enough quality to make so big online. And, of course, as much as you can, have your child give you input and advise on what they would like to see, and don't shy away from their suggestions (unless they are really inappropriate, of course). Cats, for instance. Everyone on the internet likes cats, right?

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The best images to use are those already sized for the cover format, which is 851 x 315 pixels. Images of other dimensions can be used, but they will either be enlarged to fit the width, or you'll need to crop them. Doing a Google image search that includes "facebook cover" will provide a huge number of images already sized correctly. This also offers you a chance to use great photography and design beyond what you might be able to create at home.

And with that, I'm going to go change my own cover photo now.

Cheers,

Janis
Director of User Experiences

Don't you just love a good PIF story?

​Pay-It-Forward became a popular catch phrase when the movie of the same name was released in 2000, but the concept of paying it forward has been going on for many years by many different people. I believe that people really do love helping others in some big or small ways when the opportunities present themselves. I also believe that people want to be a part of something good when it comes within their grasp.

In 1991, Tracy found out that she had a rare brain cancer at the same time she was pregnant with her second child. Following the birth her healthy son Austin via c-section, Tracy went on to have two brain surgeries, and all of this happened within a two-month time period.

Tracy and our family began to see an outpouring of love. Everyone who had heard her story wanted to help. Tracy looked at me one day and said, "How can we pay all these people back, Jack? I responded, “We may not be able to pay that particular person back, but we can pay it back to others that need it.” (I should have coined the phrase of Pay-It-Forward then!) Thus began a great journey for my sister and me helping others and eventually the idea for HelpYourHero.org was born in 2009.

Help Your Hero is our Pay-It-Forward (PIF) in a big way. Tracy always wanted and needed to find a way to help others through their journeys with their medical conditions and HelpYourHero.org is the result of this need. We are here to help people and their Heroes.

                        

I love good Pay-It-Forward stories, so one of my jobs each week is to find the PIF stories to share on our “People Who Are Paying-It Forward” board on Pinterest! They are great stories that just make you feel good inside. I have to admit that reading these stories can be contagious. After I read a good PIF story, I just want to do something to do something for someone.

If you have a good PIF story that I have not found yet, please send it to me.

All the best, always!
Smiles,
Jackie 

What's Your PAV?

They are great days when someone takes time from their day to talk with you, listen to you, or simply to just spend time with you. This makes us feel validation. Yet all too often, people with medical conditions feel left out and forgotten by friends and even some family members. The basic definition of validation means to recognize or to approve. It’s such a simple idea, really. To give someone validation is an act of recognition…I recognize you. I see you. I hear you. So if acts of recognition are such simple things, why do some people find them so difficult? The answer, as it is in many things, is fear. Thankfully, however, there is a solution. We can make things better for ourselves while making them better for others? That’s where the PAV comes in – Powerful Acts of Validation. Jackie and I spent a lot of time putting together a little book entitled Traces of a Hero. In one of our writing/editing sessions, she shared some of the problems that Tracy encountered with a few friends and acquaintances. For whatever reason, they lost communication with her. It was a sad thing for Jackie and Tracy to experience, so Jackie came up with a solution for others that may feel stuck in that place of fear and missing out on wonderful relationships. As a way to pay it forward and to help people embrace a positive future, Jackie created a list of PAV’s – Powerful Acts of Validation – easy ways for people to show they care. Here are some of them (in no particular order): Powerful act of validation #1: Talk with them. Instead of walking past or giving a quick wave, walk up and say hello and strike up a conversation. You don’t have to ask how they have been. One of the reasons that people feel awkward in those moments is because they don’t know what to say and they don’t want to say the wrong thing, but saying something is better than nothing at all. After all what good comes from not acknowledging someone when they are standing in your presence? It’s a win-win situation to acknowledge them. Along this same line is to talk with the person and not to their medical condition. Powerful act of validation #2: If you are normally someone that had previously spent a lot of time with them, then do that again. Don’t just talk about it, especially if you have no intention of doing it. Follow through with it. If they are not up to it, they will let you know. Powerful act of validation #3: Send warm wishes to let them know you’ve been thinking of them. If you were close with them, but you now don’t know how to react, you can always stay in touch by sending a card, an email message, or text. These are easy ways to communicate without a lot of interaction, but at least they know that you still care about them, even if you don’t always know what to say. Here are some ideas on how to begin if you are at a loss of words: I'm thinking of you. I’m sending good thoughts and prayers your way. I’m wishing you a good day. It doesn’t have to be a lot to be meaningful. It’s just a little something that would make their day brighter. Powerful act of validation #4: Don’t tell them to call you if they need you because, more than likely, they will not do it. People tend not to ask for help. Call them instead. Ask if they need anything from the store; ask if you can ride them somewhere or maybe get a movie and hang out with them. If they are not up to it, they will let you know. Powerful act of validation #5: Express in person or in writing how they have helped you or made things meaningful for you. We tell teachers, coaches, parents, celebrities, etc. what they did for us or how they inspired us, but there are others, the quiet and unsung heroes, that deserve our recognition, too. Powerful act of validation #6: Last, but not least, pay it forward. Once you’ve learned and been able to incorporate these gems of wisdom into your life, share them with others who could use your knowledge or are struggling. Even small acts can get a lot of mileage. Tracy being held up by her friends and family. PAV’s have the power to create happiness and that will have a positive impact on everyone involved. So don’t be a stranger. Say goodbye to your fear and find ways to reconnect with your friends or family. Best, T. Bartlett PR Manager and Story Writer

Pinterest for a Pick-Me-Up

Like most people, I'm a visual person. I love a good story, but I understand pictures much faster, and I can easily get lost in images. Sitting on a bench at the museum in front of a favorite painting is a great, soul-filling time for me.

Did you know that there's an entire study, known as Art Therapy, that trains people to use the creative outlet of imagery (as well as music, dance and other fine arts) to help their patients heal and be well? Perhaps that's why an hour spent flipping through old photo albums feels so therapeutic. Whether the memories they invoke are good or unpleasant, allowing ourselves to think about them allows us to casually explore our own mental well-being. We share many images of Tracy here for just that reason. So that we can enjoy the visual memories, think about them, and find ourselves in a different state of mind.

Obviously, it's those happier thoughts that we like more, and there are plenty of places for us to go to enjoy pleasant imagery that lifts our spirits and makes us just feel a bit better. If you're stuck at home, though, with nothing but an internet connection to entertain yourself, avoid YouTube, and visit Pinterest instead.

See, Pinterest.com is a visual idea collector. You can swap images with people from all walks of life, and from around the world. Certainly women hold the lion's share of accounts on Pinterest, but there are plenty of men as well, and, even better, a huge number of parents. In addition to sharing DIY articles for how to create a rocket pack with some 2-liters, there are also thousands of images that don't need to be clicked on to enjoy. Pinterest is used by design and lifestyle professionals, like the editors of your favorite magazine, or the producers of your favorite morning talk show, to collect ideas and inspiration. Take a moment to search for the brands and people that you enjoy to see if they are pinning.

The trick to using Pinterest to help you find and capture joyful feelings is to resist the urge to click on the pictures (unless, of course, it's something you really want to read about!). Instead, locate a pinner or a board that you're really drawn to, and enjoy the imagery.

Here's what my Pinterest feed looks like as I write this:

As I sit back and browse the images, I see several that put me in mind of the beach at summer. I can zone out on that for a bit, ignoring the coating of snow out my window, and forgetting the dismal winter we've been having. I see a beautiful image of a girl with a giant crown of flowers, and I enjoy the colors and think of my own childhood. The image of a hallway with bookshelves reminds me of the color I picked to paint my craft room, and before I can start to stress out about all that's involved with that, I take a deep breath and scroll again.

Take a moment to visually travel Pinterest. If it leads you to warm, happy thoughts, linger on those for a bit. If you're reminded of something unpleasant, recognize those feelings (don't ignore them), but move on and find something else to linger on.

Remember to include people or companies in your following list that offer content that visually refreshes you, not just offers links and tricks and DIY's (though we like those too, for other great reasons). If you haven't already, please consider including Help Your Hero's boards in your following list. You'll be amazed at how beautiful images mixed into your Pinterest feed can enhance your mood after just a minute or two of browsing. And you don't even have to make a trip to the museum.

Cheers,

Janis,
Director of User Experiences

One of Tracy's final wishes...

I am going to share something with each of you. Very few people know this.

I have been trying for months to honor one of Tracy’s final wishes, with no luck, yet. I thought I would reach out to you all and ask if you would send up a good thought or prayer for one of Tracy’s final wishes to come true…It has proven not to be an easy one, but we know nothing is impossible!

For years, there was one person that helped to put a smile on Tracy’s face no matter what was going on. I wish I could say it was me, but it was not. It was Ellen.

Ellen, I don't think you need her last name, but in case you don't know who I am talking about - yes, it is Ellen DeGeneres - a very funny, giving person who made a difference in Tracy's life and she does not even know it, yet!

Ellen made Tracy crack up laughing even when times were so tough. While going through her chemo treatments, when she walked into the St. Elizabeth Cancer Care center, the great nurses would turn the channel to the Ellen show (if it was on at that time) just for Tracy. They knew it would make her smile and laugh out loud.

The last year of her 21-year journey through cancer was really tough, but Ellen was always a bright spot in her day.

For years, Trace would say, "When Ellen finds out what you are doing Jack to pay it forward, she is going to want to have you on her show." I would laugh and agree and tell her that she needed to come with me. She told me that of course she would go - she wanted to dance and sing with Ellen. I knew that Trace had a wish for me and Help Your Hero, but I did not know she was trying to make it come true. Her wish was for me to be on Ellen's show so we could reach the families that have children with medical conditions and they could find out all about Help Your Hero from Ellen.Tracy would even wonder how Ellen would introduce us and Help Your Hero and what song would played. I told her, "Of course it would have to be Don't Stop Believin' because that is your theme song."

After Tracy passed onto Heaven I found one of her final wishes on her laptop - a letter she started to Ellen that was never finished or sent. It was dated January 7, 2012 at 12:16 p.m.Tracy went into the hospital on February 25, 2012 and never returned home until she went to heaven on Mom’s birthday May 24, 2012.

I know that Ellen loves to help people and I hope that she will help us honor one of Tracy’s final wishes. It is a wish that will help us pay it forward with Help Your Hero and it has the potential to become one of the greatest pay it forwards ever. Ellen’s been all over the news since her Oscar selfie shut down Twitter’s server with 2.5+ million retweets. Can you imagine the families that we could reach through her?

Thanks for your help in sending up good thoughts and prayers! I have even sent her a cheesy short video telling her about Tracy and her wish, so hopefully with all this together,Tracy’s wish will be granted!

 

All the best, always!

Smiles,

Jackie