#GivingTuesday - Join, Share and Help Your Hero

Hi Everyone,

Last year around this time, I was pleasantly surprised to see something in my Twitter feed about #GivingTuesday. I followed through to get some information and found that it's a relatively new concept as it was founded in 2012. It is a global movement with over 10,000 participating businesses and organizations, and I am happy to report that Help Your Hero is now counted among them.

So what exactly is #GivingTuesday? According to their website, #GivingTuesday "is a global day dedicated to giving back. On Tuesday, December 2, 2014, charities, families, businesses, community center, and students around the world will come together for one common purpose: to celebrate generosity and to give."

We at Help Your Hero are totally on board with celebrating and implementing giving ideas, and you can too! When you act to Join, Share, Help and/or Donate to us, you will be making the wonderful choice of becoming a SuperFriend to the many Superheroes out there.

• Join! Visit www.helpyourhero.org and become a member for free. In addition to the free membership, you'll receive quarterly e-newsletters and you'll be able to access forums and tips and tools needed to help others.
• Share! Do you know a family that has a child with a medical condition? Maybe you also know of an organization that assists families with children that have medical conditions. It only takes a moment to share our website, social media, or emails with them. All of us have the power to extend our reach to more families that need our free services. Invitations to others can also easily be shared right from our website.
• Help! We need your help to increase awareness of what we do and how we can all help. Are you part of a support group, forum, or do you have a blog? We need your help in spreading the word to your peers and colleagues of what we do.
• Donate! You can donate to Help Your Hero with a secure online donation. Your donations will enable us to make enhancements to the website and overall Superhero and SuperFriend experiences.

Your choice to Join, Share, Help and/or Donate is a super thing to do, and it will create many ripples of positivity. Thank you so much for your consideration. We hope to see you as a SuperFriend soon!

Best,

T. Bartlett
PR Manager & Story Writer

Everyday living gets in the way of life...

You lie in bed at night and think of all the great things that you want to do with your life. You get excited, and when you wake up, you are ready to take on the anything that comes your way with the notion that you will start working on the list of items that you really want to do with your life. Your feet hit the floor and you are ready.

You jump in the shower only to find out that the hot water heater went out overnight. A cold shower will wake anyone up. As you get breakfast ready, you find you are out of milk, so now you have to go through a drive-thru before you drop the kids off to school.

As you hurry a cup of coffee down your throat, you look at your phone and have a text to get into the office ASAP, big problems. You scurry to get ready and one of your beloved children remembers that they need a box of large matchsticks for a school project - today - and they all have to be lit and then placed back in the box.

You put on your SuperParent cape, metaphorically speaking, and you get it done. You get the kids dressed and out the door. You go through the drive-thru and run into the Supermarket to get the big box of matches. There you sit in the car, with the windows cracked and you light 500 matchsticks and blow them out through the window. You realize that you must look like Cheech and Chong with all the smoke coming from the car.

Your idea to save the world, write a book, invent a new product to make millions, and work on your dream job have all gone by the way side. You just want this morning over with and it is only 8:00 a.m. 

I call this condition "Everyday living gets in the way of life.” All the things that we have to do on a daily basis - work, clean, cook, shop, taking care of your loved ones - can take over our lives and keep us from doing some things in life that we really want to do - our big life goals!

We need to reverse the order here. Let’s call this condition "Our dream way of life gets in the way of everyday living" but how do we do this? A few things come to mind like winning the lottery, hiring a nanny, a maid, a chef, or just quit doing the daily things altogether. Well, the chances of most people doing these things may be slim, but there has to be a way, right? Everyday living is going to continue. We all know it. It cannot be denied. 

Yes, it will continue, just as it has for others who are somehow able to fulfill their life’s dreams, like Oprah Winfrey, Nelson Mandela, Ghandi, or Meryl Streep. So what is their secret?

I believe there is a common denominator. It is the belief that you are going to do it – somehow or some way. You don't know how or when, but you keep that dream, that goal, in your mind and you envision it every day. You make notes and you begin to have some clarity in your mind. Don't be too specific about how it will look because that can hold you back. Things often don’t turn out exactly as we’ve envisioned them to be. We need to have open minds and be open to change. Sometimes what actually transpires is even better.
All the best, always!
Sm​iles, 

Jackie
President & Founder

Storytelling Helps Us Advocate and Connect

At Help Your Hero, one of the things we advocate for is storytelling, and we do this for several reasons:

• It's fun to share and connect with others through stories.
• It's a way to escape the sometimes painful realities of daily life.
• It's a way for us to learn through the experiences of everyone around us, and as we all know, everyone has a story to tell.

More and more, people are choosing to share their stories online via blogs and social media platforms, and since October is National Down Syndrome Awareness Month, we'd like to share with you another option we found recently: My Great Story on the National Down Syndrome Society's website. 

My Great Story enables people to submit and read stories. They are categorized by theme and there is even a search feature to help you find more specific stories. Submitting stories is an easy process and each story is limited to 500 words. Something else that's great...they choose stories each week and month to promote as the Great Stories for that week or that month!

According to the NDSS, the "My Great Story campaign is the largest NDSS public awareness initiative. The goal of the campaign is to ignite a new way of thinking about people with Down syndrome by sharing stories written by and about them. All are welcome to participate in the campaign, by sharing a story or voting and commenting on the stories already in the collection. There over 600 stories written by self-advocates, their family members, friends, teachers, coworkers, coaches and anyone else who has a positive story to share about someone with Down syndrome."

So if you have a story to share, why not share it today?

Best,
T. Bartlett
PR Manager & Story Writer

Do you have a sign that reminds you of your loved one...

For years, before Tracy’s passing, I would occasionally see a hummingbird and I would get so excited. I always had the same thought from my soul on those rare occasions that I would see one, “Everything is going to be okay, Jack.”

Just hours before Tracy passed on Mom’s birthday, I woke up early from our sleepover, started the coffee and went out on Mom’s and Dad’s porch to post an update. I was not on social media for days and I was barely answering text or phone calls. I was in a state of disbelief that is hard to explain. I knew that I needed to give my wonderful friends and family an update. Everyone was so supportive and grief stricken as well. I also needed to ask for prayers for Tracy’s peaceful passing and strength for all of Tracy’s loved ones. It’s tough stuff, to say the least.

After I posted an update on Facebook and CarePages, I noticed a flutter to the left of the porch. I realized it was a hummingbird. It then came within three to four feet of me, stopped and looked at me and then flew off. I knew it was God communicating with me - reminding me “Everything is going to be okay, Jack”. I found peace in seeing that bird on that tough morning.

Tracy passed at 1:35 p.m., surrounded by her loved ones. It was surreal. Decisions needed to be made while many people were still coming and going to pay their respects. I just wanted to step outside for a little bit to collect my thoughts, so I went to the backyard and sat on the wall and then went back to the porch. When I sat on the glider, I suddenly saw a flutter to the left of the porch again, and yes, that hummingbird repeated his/her performance from earlier that morning. I just cried, I knew it was God, and now Tracy, telling me, “Jack, everything is going to be okay.”

You see, I made a deal with God and Tracy… she could go to heaven, but only if she let me know that she was always with me. They both knew that a hummingbird was a quick way to get my attention that day, and that it did. I knew it was a sign that she arrived safely with God and, of course, that everything is going to be okay.

A couple mornings ago, I saw a hummingbird at my feeder, and it just spoke to me to share this incredible story again. I hope you know that “Everything is going to be okay, my friend."

Do you have a sign that you receive that reminds you of someone that has passed, or lets you know that everything is going to be okay? Please share with us if you like.

Smiles,

Jackie
President & Founder

What was really in my Green Notebook…

Sometimes memories can hit you hard and the memory of the green notebook was one that hit me hard this week. Tracy was a notebook kind of person and for good reason. Between her three sets of doctors, appointments, medications, keeping track of symptoms and other everyday life events, you have to be organized. I knew I needed a notebook for Tracy when I had to take care of business for her.

I settled on a medium-size, green notebook, one that would fit into my purse or bag easily because I had to carry it with me wherever I went. Everything about Tracy’s life would now be in this notebook.

When you have a rare disease, it’s even more difficult to find cures, treatments and studies to participate in, and when Tracy’s insurance denied her for a drug that she needed, things changed. We were now in a battle to get the denial letter so we could go to the drug company to ask for the drug for free. I now had to dig deeper for anything to help her because it could have been too late for this drug due to the delay.

With the last three years of her medical life on paper (over one and a half inches thick), CD’s with her last three MRIs, and the phone number where I could order slides of her rare tumor (which I assume it is still over at UC today) to be sent to any doctor that requested them, and the approval for an Angel flight to take Tracy and me anywhere she needed to go across the USA, I was ready to find whatever Tracy needed. Thankfully I had the blessings of her doctors. They told me to do anything I could to find a cure or treatment and they would do or try what they could or help us make decisions about what we should do.

Over the years I went to Google and would type in Mesenchymal Chondrosarcoma (MC) brain cancer and see if anything would lead to something new. If it did, I would print it off or email it to Tracy’s doctors. But now we were in crisis mode, and I could not rely on Google to help me.

I started with a nursing representative at the National Cancer Institute. I gave her the spelling and told her to look up the disease as it pertained to brain tumors because it’s rare in the brain, but not as rare in other parts of the body. She told me that she had to put me on hold and it would be a few minutes – she had to look it up in her textbooks as she called them. I waited and minutes later the nurse came back and said, “Sorry, but I am having someone else help me because I cannot find this type of brain cancer so it will be a while longer.” Not what I wanted to hear from the one place that houses all the information about cancer. She came back on the line and told me that they couldn’t find it. I asked, “What do I do now?” She kindly gave me names and phone numbers of other institutions across the USA and told me to start making calls and to ask for anyone that has dealt with this rare cancer.

So I did just that, I found people that were willing to help. They sent out emails to find doctors that had dealt with this type of cancer. We got some hits, but once they reviewed Tracy’s medical history and MRI’s, they had nothing new to offer that had not already been tried by Tracy’s doctors.

Through those last months, when I would enter the hospital room, I would see the look of anticipation on Tracy’s and Mom’s face every day. They wanted to know if I had found anything else out. It was hard not having anything new to report so many times, and I even lost my job through all of this, but I had another job to do, whatever it took and I would do it for Tracy, for Mom and dad, and for Chaz and Austin.

I found hope at The University of Michigan. They were working on a new drug with rare sarcomas and felt that it was worth a chance. We would take the Angel flight to UM and stay there, but I wanted the UM doctor to have a consultation with Tracy’s main doctor, her oncologist, to talk it over to make sure that he understood how they were going to proceed. I am a lay person, I learned a lot through all of this, but I had to trust her oncologist to make the final decision.

Unfortunately, the two doctors were never were able to have that conversation. Instead, hospice was called in.

As I sit here and remember all the events of those last three months and page through the green notebook to read my notes, I find that I am even more convinced a cure registry is so much more needed than I originally thought. We have to make it an even playing field so that everyone can have access to every cure, treatment, relief of symptoms and clinical trials for every disease.

It was exhausting, frustrating and mentally draining to do what I did for months, but I did it with hope and love and would do it again, if needed, but my hope is that we can change this.

I hope you will consider signing this petition and sharing it with anyone you know that may want to help us. This is another way to honor Tracy’s journey. Take what she went through, as tough as it was at time, and make something good come out of it by helping others.

Click below to sign my petition
https://www.change.org/p/united-states-surgeon-general-create-an-online-registry-of-cures-and-or-potential-cures-that-is-made-available-to-the-public

Thanks for your help!

Smiles,

Jackie
President & Founder

Would an online registry of cures and/or potential cures for every disease, change the outcome for many? That is our hope.

Hi,

I've started the petition "United State Surgeon General: Create an online registry of cures and/or potential cures that is made available to the public." and need your help to get it off the ground.

Will you take 30 seconds to sign it right now? Here's the link:

http://www.change.org/p/united-state-surgeon-general-create-an-online-registry-of-cures-and-or-potential-cures-that-is-made-available-to-the-public

Here's why it's important:

Do you believe there are cures that we know nothing about for the many diseases out there? We have unbelievable technology with new discoveries and advances every day. Heck, we put the first man on the moon in 1969, and with that intelligence 45 years ago, I find it very hard to believe that we cannot find cures for every single disease within the human body. I know I am not alone in this thinking.

Every day children and adults are diagnosed with medical conditions. When that happens to a loved one, the gut reaction kicks in and you want to research everything about the disease or condition – symptoms, causes, treatments, side effects and cures. But all too often, we cannot find information for cures, even if they exist. So what are we to do? How do we go about finding information on cures, or the potential for them, in order to make the best and most informed decisions? While we can rely on medical professionals for their opinions, we are left with the idea that there is still more to know.

I, too, have been personally affected by disease within my family. I felt helpless, but had to do something. My sister Tracy had a rare brain tumor, and like Tracy and me, there are billions of people affected by disease and other medical conditions.

People dealing with disease should not have to worry that they haven’t been given all the information. A solution is to make sure everyone has equal access to information via a cure registry because, as we all know either from personal experience or the experience of a loved one, a cure is the #1 wish list item for anyone with a medical condition.

An online registry of cures and/or potential cures will bring us a step closer to fulfilling this wish. We believe a nonpartisan committee, guided by legislation, should build an online, transparent, cure registry to which everyone will have access. The registry would be a place to see what cures are currently available or those that have been approved as well as those not yet approved, but hopefully would be at some point in the future.

We reach out to you in this petition so that you can help us in letting our governments know that we want information, that we have the right to this information, and that we have the right to make informed medical choices for ourselves. A cure registry is much needed and should be something that is protected by legislation and governed by a non-political or non-partisan committee. We seek 100% transparency so it is an even playing field for everyone to have all the information about the cures and potential cures that are available.

Had a cure registry been available when my sister Tracy was battling her rare brain cancer, Mesenchymal Chondrosarcoma, I could have searched and found any possible cures or treatments in progress around the country. Instead, I spent many hours calling and emailing medical institutions across the nation trying to find someone, anyone, that had treated this rare cancer with no luck and Tracy eventually lost her battle. If a cure registry had been in place at that time, I could have searched and found this information within seconds and Tracy could have had other options, and perhaps she could still be with us today.

An online cure registry, developed as a searchable database, would give us a way to see the progress behind finding cures. With a nonpartisan committee and legislation in place for transparency, we would demand for ourselves and for our loved ones, the possibility that cures be given a chance and not be hidden or squashed by greed any longer.

I know firsthand, when you want or need to change something in this world, passionate people will do anything to help their loved ones, and then mountains can be moved. And we know this task will be like moving Mount Everest, but with your help in signing and sharing this petition, together we can take on this huge mountain. Then everyone will have access to information about available cures.

Thanks for your support! 
You can sign my petition by clicking here.

Smiles, Jackie Waters                                                                                                    

Member Update for HelpYourHero.org

Thank you for being a part of Help Your Hero!

When we launched seven months ago we knew we needed to continue through a "test” phase to see how members interacted within our community. Being a unique, new concept to the world has it pros and cons, so being proactive with necessary changes has been at the forefront of our team. We want to ensure that we make Help Your Hero the best experience for all involved.
As a result of our observations, we will be making changes to HelpYourHero.org. Primarily, we'll be shifting from the private "Headquarters" to a community site that will focus on how to answer the burning questions that are often asked but the communities around our Heroes. There is much more to it than what we can practically explain here, though, and over the next several weeks and months, you'll begin to see the larger picture of our new solution.
One important change that will effect a great many of our members is the removal of child accounts. We've come to realize that the solutions we can offer the best, and the ones that make the most difference, are those that our adult members can use. We'll still have plenty for the kids, and your Superheroes will still have the opportunity to create their own superhero character, but by eliminating the child accounts, we are able to offer a better registration experience, and put less pressure on our SuperParents to fully build their child's Headquarters. The change will no doubt feel a bit weird, but we truly believe it's the best decision at this time.
We'll be in touch as we continue to make changes to the site and adjust the membership settings. Don't be surprised if you log on and everything is a bit different! If you have a question, or get confused about the change, please contact us.
Thank you again for your help in propelling Help Your Hero in the right direction. We hope these changes will allow us to better serve each of you in the ways you need most.

The Hero Helpers
Jackie Waters & Janis Hurst
(859) 441-6393
CustomerCare@HelpYourHero.org

The people that show up in your life during a difficult time...

Everyone has different reactions to loved ones who have been diagnosed with medical conditions, and there is really no right or wrong reaction. It just "is what it is.” Just like we learn in different ways, people react in different ways, and it can be difficult for people to move beyond a certain place. It's not often easy to understand, but when you let go of your expectations, you will find that you have less confusion and frustration.

From my personal experience these are the various ways in which people have reacted:

• The Savior – This person will be by your side at all times and do everything they can for you. They are almost always strong in front of you, but they may have a moment or two where they break down with you. They want to be your savior.

• The Emotional – They are just so overwhelmed with the situation. They want to be there but they are too emotional and they don’t want to get you upset. They try to be strong in front of you, but they are just having a hard time accepting it. You may find that they come and go because they need to have alone time just to regroup.

• The Checker-inners – They check in often and do things for you like cook meals, send cards, and call for updates. They offer to help in any way that they can.

• The Out-of-the-woodworkers – They are people that you have not seen in a long time, but they come out of the woodwork to help. It could be your longtime friend that you lost touch with just because life got in the way. They reach out wanting to help and do anything to help. Rekindling old friendships is a great advantage of going through a tough time.

• The Retreater – They don’t know what to say or do so they just retreat. They may check in when they can, but they keep their distance for the most part. Some may carry guilt because they have a hard time being around. This is a tough one because it is hard to really know what someone is thinking or feeling.

• The "Whatever it takes” – This person is the can-and-will-do-everything-and-anything-for-you person. They have, at times, put their life on hold for the most part and are there any way that they can be. They are the person you can lean on at all times.

You may be wondering why I am writing about this today? I think it's important for people to understand the different ways in which people will react, and we shouldn't be hurt if they react in ways we didn't expect. Just know that people have a great heart and want to be there, but for whatever reason, their reaction may be different than what you expect!Please share if you have experienced another personality during a difficult time. It may be helpful to someone in the future. 

All the best, always! 

Smiles, 

Jackie 

A Thousand Memories Worth...

Having a moment (or many moments) when you miss someone who has passed, can be hard. Knowing what to do to get you through these tough moments is different for everyone. I knew soon after Tracy had passed that I would have to find ways to cope with this big loss in my life. I have a few ways that help me cope when I feel one of those tough moments coming on.

• Reflecting on memories - I go back to many of the great memories of us together. Sometimes it is something that was not a big deal at the time, but now it is for me.
• Writing - I have been very fortunate to be able to write a lot about my life with Tracy and share it. I know it has helped to inspire some people and that is very comforting for me.
• Honoring her legacy - I have Help Your Hero to help me with our pay it forward promise and to keep her legacy alive and that is very rewarding.
• Going through old photographs – Looking through photos of Tracy and me is the one that I have found helps me cope the most. I have them in my bedroom and look at them each morning as I wake up and get my day started. I have photos throughout my house, and as I type this blog post, I look at the many photos that I have in my office of Tracy and me. As much as I miss her, they bring me so much comfort. To see her smiling face again brings a smile to my face.

This last coping method was only possible because of all the photos we took together, and it is easy to find a photo of her because they are all around me. In looking through all these photos, I realized that I have so many great pictures of Tracy and me, and it saddens me that I will not ever have another photo of us together again in this physical world.

Because of this, I challenge you to take more photographs of you and your loved ones.

Some people don't like to have their photos taken for different reasons. Don't worry about what you look like. People analyze your photos a lot less than you think they do, and they are mainly analyzing themselves if they are in the photo. I have been a size 6 and a size 16. I can tell you, if I waited to have photos taken until I was my ideal size 10 again, I would not have had photos taken of me for the past 10 years...and possibly even more.

So grab your camera or your cell phone and take pictures while you are making a lot of great memories with your loved ones this holiday season and beyond. It can bring you a lot of comfort in the years to come.

All the best, always!

Smiles, 

Jackie

Who is your favorite Superhero?

Because today is National Superhero Day we ask the question: Who is your favorite Superhero? Is this person fictitious or is it a real Superhero who has inspired you?

I love Superheroes because they want to help others. They want to make the world a better place. They are unselfish and are a positive influence.

My favorite Superhero is a real person. She is someone who has inspired me for many years and has changed my life - my Sister Tracy - also known as Superwoman T-Si. She never tried to be an inspiration to others. She would say that she was just trying to live her life, but in doing just that, she was and still is an inspiration.

On this day to recongize our Superheroes, be sure to share with us your favorite Superhero and why?
Smiles,

Jackie
President & Founder

National Pay It Forward Day

Doing something for someone else can be exhilarating plus you can possibly help someone else in ways that you may never quite know how it will effect them or even you.

National Pay It Forward day is today, April 24 and we want to honor that day at Help Your Hero. Help Your Hero was built on a 1991 Pay It Forward promise that my sister Tracy and I made to each other that has been life changing for both of us and now many more people and that is awesome!

To help jump start your Pay It Forward, we have listed out many Pay it Forward ideas that are simple and free. Be sure that you share with us how you paid it forward so we can all celebrate this National Pay It Forward day!

Smiles,

Jackie
President & Founder

Sometimes you have to ask for help.

Sometimes you have to ask for help and this is one of those times...

When my team and I first began working on the unique concept for HelpYourHero.org to honor Tracy and Grant's legacy, we agreed early on that it should always be free to register and use. By eliminating membership fees, we are able to provide tools and services to the supportive communities around children with medical conditions without increasing financial burdens. After all, families of children with medical conditions don’t need to worry about coming up with money for one more thing. We know what it’s like to already have so much your mind and to be burdened by money, worry and fear.

As such, we have designed HelpYourHero.org to be sustained through a combination of corporate partnerships, merchandise sales, and later on as we grow, the sale of mobile apps and games. Until these things take off, however, we need your help while continuing to offer our free service. Creating and growing Help Your Hero is requiring a much greater financial investment than I am able to handle on my own. If my pay-it-forward promise is going to succeed, I must ask for help.

For those of you that know me, you know that I would rather give than receive, but I have to remind myself that this is not about me. I am asking for your financial support to help us continue developing HelpYourHero.org into what we've envisioned. To do this we need your financial support.

Trust me when I say I know that times are still tough for all of us. The financial toll of launching and maintaining Help Your Hero has become more than I had planned and certainly more than I can afford on my own. Every contribution help - in big or small ways!

If you are not in a position to help with a donation at this time, please share our website with your social circles to help us reach more people. Thoughts and prayers are also extremely welcome, as Help Your Hero has always been based on the foundation of positive thinking!

Thanks so much for your kindness!
All the Best, always!
Smiles,

Jackie
President & Founder

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