#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