NJ Sharing Network Campus Going Smoke-Free!

Hey everybody!

Hope you’re staying warm and embracing this chilly weather! Personally, I cannot wait for the snow!

I wanted to give you a quick update about something really awesome that NJ Sharing Network is doing on November 20th. In honor of the Great American Smokeout, our campus is going SMOKE FREE… not  for just one day, but permanently! By now you know me, and you know everything I do is over the top. So, I decided to get my film crew together and we made a video about our move to a smoke-free campus. Mr. Pumps and I co-starred, and he did such an awesome job. I am just so proud to call him my heart-partner… even more so now that he’s kicked that bad habit!

Anyway, watch it for yourself! I bet you’ll get a chuckle out of it :)

Thanks for watching and remember… Keep your heart healthy, someone else may need it!


About the Great American Smokeout:
The American Cancer Society marks the Great American Smokeout on the third Thursday of November each year by encouraging smokers to use the date to make a plan to quit, or to plan in advance and quit smoking that day. By quitting — even for one day — smokers will be taking an important step towards a healthier life – one that can lead to reducing cancer risk.

FACTS:
Tobacco use remains the single largest preventable cause of disease and premature death in the US, yet about 42 million Americans still smoke cigarettes — a bit under 1 in every 5 adults. As of 2012, there were also 13.4 million cigar smokers in the US, and 2.3 million who smoke tobacco in pipes — other dangerous and addictive forms of tobacco.

See quitting resources and information from the American Cancer Society.

Anthony Rizzo’s Floragraph Finishing Ceremony

A beautiful ceremony was held on November 6, to honor organ and tissue donor Anthony Rizzo.  Read below to see what his mother, Suzann Rizzo, said to those who attended.

IMG_7279

The Dignity Memorial Network will honor six organ and tissue donor families across the United States with a floragraph of their loved ones that will be featured on the Donate Life Float entry in the 126th Rose Parade on January 1, 2015.  Tonight we celebrate that Dignity Memorial will be sending Joe, Joseph, Elissa and myself to participate in the creation of the Donate Life Float and to honor Anthony with a floragraph.  A floragraph is a memorial portrait of Anthony made out of natural and floral material.  Hundreds of volunteers participate in the creation of the Donate Life float.  His floragraph has been shipped from California to Staten Island to be completed.  We have completed his floragraph and it is now ready to be sent back to California and be placed on the float beside the other honorees.  Anthony will be among 72 honorees on this years float.  We are extremely honored to be a part of such a magnificent event and we would like to thank the Dignity Memorial Network for allowing us to be able share our story with others that have lived what we have lived.  Before we send the floragraph back to California, we wanted to share this wonderful experience with all of you.

This year’s floats theme is “The Never Ending Story” which celebrates the inspiring stories that live on forever through organ and tissue donation. This evening you have listened to only one of the stories.  This story has helped us in our healing process, and our hope is that you spread this story and educate others. We welcome you come, touch, and see what has been created from our earth by volunteers.  Please remember that this is the special time of year that we give Thanks for what God has given us and although Anthony is no longer with us, his story is never ending, and for that we are thankful.

First and foremost I would like to thank everyone for coming this evening to celebrate our son Anthony. The last time we were together like this was when were we all were saying goodbye to a 16 year old boy whose life had tragically ended in a fatal car accident.  Tonight is not about the car accident…tonight is not about saying goodbye.

I’m sure that everyone in this room has experienced tragic loss in one way or another….Whether it being a grandparent, a parent, a spouse, a cousin, a sibling or a child. The feeling of loss is not all the same.  You cannot explain it.  You cannot teach it.  The only word that can be used to describe loss is “emptiness”.  As a catholic we learn that when we die our bodies are laid to rest but our spirit/ our souls go to Heaven to live with God through all eternity.  Life itself does not end, it merely changes.  The words that I have just used to describe “death”, to me are just words.  We are left behind on this earth to endure the tragedy’s, to continue on,,,,, to live.  We cannot be left to try to understand God’s plan for us, but just know that he is there with us every step of the way.  Tonight we celebrate and learn how God was with our family through the death of Anthony and how he continues to be with us even 4 ½ years after.

In the 11 days after Anthony’s accident we learned that if Anthony ever recovered from his injuries, he would never be the son, the brother that once was. The injuries that he suffered were so severe that he would only be left with a shell….the outside…. With the technology we have today Anthony could have stayed alive on all those machines for a long time.  What kind of a life would that be for Anthony, what type of future would there be for Joseph and for Elissa. We wanted to be able to smile when we spoke about Anthony…we wanted to remember the way that Anthony laughed, they way he loved so dearly.  Although the choice was extremely painful for Joe and I, we knew that it was time for us to let him go.

Less than one percent of all organ donors can actually be considered for organ donation. Anthony fell into that one percent category.  Anthony’s body was as perfect as the day he was born.  All his injuries were sustained in Anthony’s brain.  The decision for Organ Donation was tough for us, but we knew that if Anthony had to make that decision that he would have agreed.  What we didn’t know was that the choice for organ and tissue donation would continue to affect our family even today.  Although we felt this way at the time of Anthony’s death, we learned that we are not alone.  There are thousands of people every day waiting for an organ to be able to continue living, and to continue loving their family.  Some die waiting for that precious gift.  Today we are all able to watch the season’s change, to see the beautiful colors of the trees, their are many that cannot.  They wait, and wait for that perfect match to be able to see again.  Today, so many women are enduring breast cancer. With tissue donation, reconstruction can be made possible…to make their struggle a little bit easier.  When a family is struck by tragedy they are not thinking of saving lives, they are lost in there own struggle….why wouldn’t they be?  At the time Joe and I were not thinking of organ donation, we were only thinking about Anthony.  That changed.

When Joe and I made the decision for organ and tissue donation we did not realize the impact it would have on our family. The decision was made…. and then we moved on to the next decision we had to make.  It was time to lay our oldest son to rest.  Years went by before we thought about trying to contact one of Anthony’s recipients…One of the 5 recipients.  Anthony saved the lives of 5 other people.  Imagine that.  It is still hard to wrap your head around that concept.  Our boy saved someone else’s life….We did hear back from one of Anthony recipients……a boy…..At the time of Anthony’s death our new friend Chase was only 7 months old.  This little boy would have died without a liver transplant…Anthony was a perfect match…If you didn’t know, The liver is the only organ that can be split.  Chase received a small part of Anthony’s liver.  Chase’s body grew around the organ because he was so small.  It saved his life.  How happy do you think those parents were that their baby boy would now be able to grow up??…Maybe play soccer like Anthony did.  How lucky were we to learn that they wanted to meet us??  Words cannot describe the feeling of meeting the person that now has a part of your son living inside him.. He is now 5 years old.  The ride home from Whitestone, NY was a quiet one.  I believe that day we knew that we made the right decision for organ donation.  Anthony may have died, but his Gift of Life lived on in that little boy.

Children grow up in the world today with many Hero’s. Baseball heroes, Football heroes, now there is another Hero.  Joseph and Elissa will grow up not remembering that they lost their brother in a tragic accident and he died Period….. but they will grow up knowing that their brother Anthony saved the lives of 5 other people with his Gift,  two people can now see , and countless lives enhanced….  A real life hero !!

Tonight is about learning what happened after….Tonight is about educating others on Organ and Tissue donation. We continue to learn how Anthony’s gift of life continue to effect the lives of so many others and how you can help in spreading what you have learned tonight.  We hope that you will take with you what you have learned and educate others.  We, are looking forward to the day that we will be blessed to meet the 4 other recipients of Anthony’s gift and will look forward to sharing that with all of you.

Faith Leaders Focus on Life-Affirming Gifts by Jay Arisso, Jr.

For me, connecting my faith to my position here at NJ Sharing Network, as Manager of Family Services, has always made sense. My work is more a mission than a job. Generosity is at the core of my faith. I believe God helps us and is generous to us and we, in turn, must be driven to help others.

As the lead pastor for a non-denominational Christian church in Elizabeth, my faith supports my work. And my work supports my faith.

On National Donor Sabbath, November 14-16, I will join faith leaders in New Jersey and around the nation to focus on the life-affirming gifts of organ and tissue donation. We celebrate Donor Sabbath each year, two weekends before Thanksgiving.

During this time we all share in the conversation and spread the life-saving message. Nearly every religion supports organ donation, and sees donation as a selfless act of compassion and generosity. During Donor Sabbath, many faith-based leaders will organize programs to educate their congregations and share the stories of recipients and donor families — as well as those of people waiting for a life-saving gift.

For many years, I’ve organized National Donor Sabbath events that have brought together Muslims, Catholics, Protestants, Jews, Buddhists and other leaders of faith communities to talk about organ donation. We are able to break down the religious walls and come together to focus on what we all share: a deep regard for the mission to save and enhance lives through organ and tissue donation.

I share with faith based leaders that educating members about organ and tissue donation as a matter of everyday life is important. Education provides the understanding and information necessary in case the opportunity to donate ever arises. Faith leaders should have the knowledge they need if members of their communities reach out for their help and guidance.

We make sure the faith-based leaders who participate in our Donor Sabbath events have the education they need to answer any question. At a recent event that NJ Sharing Network organized with Robert Wood Johnson University Hospital — Hamilton, some faith-based leaders asked questions such as: Can a person who is an organ donor have a viewing? They can. Will organ donation interfere with a burial? No, it will not.

We also explained brain death, and we shared stories of how donor families suffering from loss often find solace in their decision to help others. And we talked about how the need for registered donors is paramount.

So often in our world we focus on what makes our faith communities different from one other. A wonderful element of National Donor Sabbath is that people from all major faiths come together to focus on what we all share.

On Donor Sabbath we talk about how we are all connected, and how we are united in the mission to enhance and save lives through organ and tissue donation. On Donor Sabbath, if you are a faith-based leader, please learn more about organ donation and share that information with your members. And if you are a member of a faith-based community, please consider striking up a conversation with your faith leader.

Remember that NJ Sharing Network is always here to help support and encourage that conversation.

IMG_2356_Jay_Rtch_Clip

Jay Arisso Jr., BSB, CGRS,
Manager of Family Services at NJ Sharing Network

Jay is Senior Pastor of La Iglesia Church in Elizabeth, NJ and oversees NJ Sharing Network’s Family Services program.

Happy Fall!

Hi everyone,

It has been so long since my last post, but for good reason! I have been so busy with NJ Sharing Network events and celebrations, and I wanted to give you a recap of everything that has happened over the past few months. As you may know, the 5K was a huge success this year: We had over 6,000 participants and raised over $800,000! We could not do it without you… THANK YOU! While fundraising is still open, we are excited to give you important news about next year’s 5K. Stay tuned!IMG_4973

Although summer came and went, we ended it on a positive note with National Minority Donor Awareness Week (August 1 – 7), celebrating and remembering minority organ and tissue donors while highlighting the critical need for people from diverse communities to register as organ and tissue donors. Kicking off the school year and following National Minority Donor Awareness Week, Hispanic Heritage Month (September 15 – October 15) gave us a special time to honor Hispanic organ and tissue donors and recipients across the country. While this awareness initiative will soon come to an end, the precious gift of life given by so many will live on forever.

A little fact about me, the fall is my favorite season! I love pumpkin and apple picking, Halloween festivities, and of course my favorite NJSN event (aside from the 5K of course!) our Annual Golf Classic. It was such a success this year – beautiful weather and good company. Thank you to our sponsors! Check out photos from the day.

My favorite time of year is also home to National Donor Sabbath (November 14 – 16), which marks a special time across the country for clergy and their congregations to unite and help spread the word about the gift of life. For resources and more information about how to get involved in your community, download our resource kit!

Well, I won’t keep you any longer… if you’re anything like me you still don’t know what you want to be for Halloween and need to find the perfect costume! Finding a costume to fit my heart-ish figure is always a task.

Stay healthy and happy this Halloween… here’s how!

1. Fill up on healthy foods before going trick-or-treating – the less hungry you are, the less snacking along the way!

2. Hand out low-sugar treats or toys instead of candy – some children prefer to take a small toy (consider pencils, erasers, stickers, tattoos, glow sticks). After all, the excitement is in collecting the treats, not necessarily in eating them!

3. Exercise while trick-or-treating: Walk from house to house instead of driving – but be careful! Always make sure you are with a buddy before venturing out on your own.

4. Keep only a small bag of your favorite treats, and hide the rest in the freezer so it is out of sight, and out of mind!

5. Purchase Halloween candy the day of trick or treating to avoid temptation. Buy less than what you think you will need to avoid leftovers and purchase candies that are not your favorite.

XOXO TTYL,

Ms. Pumps

A Tale of Hope by Maddy Bowles

Anne Bulger

Martha Bowles celebrating the tenth anniversary of her transplant with her kidney donor, Anne Bulger.

My name is Maddy Bowles. I’m 18 years old and I have spent more than half of my life helping my mom fight for hers. More than 15 years ago, Anne Bulgermy mom needed a kidney transplant. My family went through a lot of heartbreak and disappointment as it was discovered that out of 14 family members and friends that got tested to give my mom a kidney, we were unfortunately not a compatible match. My mom, Martha, was on the donation list for years, not to mention all of the generous people who offered to be a living donor. But she had antibody rejection issues, so she went on dialysis and kept waiting. There were nights that my younger sister, Clare, and I didn’t know if we’d have my mom the next day. And there were some things I didn’t fully understand at the time, such as when my mom missed my eighth birthday because she was in the hospital.

Finally, my great aunt Anne Bulger, proved to be a match and the kidney transplant was a success. Now, each January, our family celebrates my mom and Anne’s health and the successful transplant; this year marked the 10th anniversary of the transplant!

This June, my sister Clare and I raised money for NJ Sharing Network (along with the help of many family and friends) in honor of my mom and Anne’s 10th anniversary, and our family participated in the 5K Walk/Race. I’ve been involved with NJ Sharing Network for years. Throughout high school, I worked to help the Donate Life cause, and my family also participated in the National Kidney Foundation Walk in NYC a few years ago. I even wrote my college essay on my mom’s gift of life, family hardships, and the power of NJ Sharing Network’s support.

Though my mom’s sickness was a trying time for my family, ultimately we became closer than ever. We’ve learned to never take our health for granted, and to cherish the time spent with loved ones.

A Tale of Hope by Brian Mansfield

Brian Mansfield

Brian Mansfield, Awardee of the 2014-2015 Benjamin R. Chirls Scholarship

Like most people I have heard of organ and tissue donation, but never really knew much about it. I knew the concept, but never understood how great of an impact it had on peoples’ lives. However, that all changed in December 2012, when at the age of 16 I found myself in need of a cornea donor in hopes of saving my vision in my left eye.

At the end of my sophomore year everything was going great. I was playing lacrosse, doing well in school, having fun with my friends, and being a kid, but then everything changed in the blink of an eye. In May 2012, I contracted Acanthamoeba Keratitis in my left eye. It is a very rare and serious eye disease that affects only one in two million, and can lead to blindness or loss of an eye. In my case, I suffered from vision loss, excessive tearing, swelling, pain, eye spasms, and light sensitivity so severe I couldn’t even tolerate the light from a cell phone. I had to stop all my activities, including school because of these symptoms. Over the summer I was restricted to a pitch black basement due to the light sensitivity, while at the same time undergoing numerous different treatments, and visiting the doctor’s office three times a week in New York City as I needed to be closely monitored. My condition only worsened and despite suffering from these symptoms I attempted to go back to school the following fall for my junior year.

School was very difficult as I faced numerous challenges because of my condition. I couldn’t look at the board, was still in constant pain, and was frequently absent due to my illness, which led me to be fall behind and play catch up in class. I was able to push through these obstacles until November when I had to stop going to school as I underwent an unsuccessful experimental surgery called Collagen Cross Linking. The surgery worsened my condition and I required an emergency corneal transplant or risk losing my left eye. The transplant was initially successful and my doctors were optimistic, until I started to experience unexplainable and unexpected complications two weeks after the surgery. My symptoms returned, and I was again relegated to the pitch black basement. Miraculously my condition started improving in March, and despite still suffering from severe light sensitivity I requested home instruction.

Through it all, school was always a top priority for me, and despite all these challenges, I finished my junior year on time while receiving straight A’s. I continued to improve over the next several months, and eventually the light sensitivity improved enough to the point where only natural light bothered my eye, and I am now only suffering from swelling in my eyelid. I did go back to school this fall for my senior year, but am limited in my activities due to the stitches that are in my eye. I can no longer play sports, swim, or do pretty much any other physical activity, until the stitches are removed, but my doctors plan on keeping them in indefinitely.

My doctors are also considering another surgery in December to resolve the remaining symptoms. I am however much better than I was 2 years ago, and am looking forward to attending the University of Richmond next fall.

My involvement with NJ Sharing Network began about six months after my transplant when my complications subsided enough to allow me to leave the house, and I was able to participate in my first SK event along with my family. It was a very emotional experience for all of us, especially for me. During the walk I met families that donated the organs of their loves ones and was inspired by their stories and how much joy it brought them to know that they were helping others and honoring the memories of their loved ones. Also, when I walked with donor recipients like myself, I also realized that I wasn’t alone and was now bonded with so many people who shared my experience. Recently, I completed my orientation and training to serve as a Volunteer Ambassador for NJ Sharing Network.

I understand how important it is to raise money and participate in SK events and various fundraisers, but due to the shortage of organ and tissue donors, I feel that awareness is just as important, perhaps even more so. That is why I feel that the best way that I can help is to increase donor awareness by being a “Walking Advertisement ” for this worthy cause, which is so very important to me and to so many others. I feel that most people don’t fully understand this cause until they make a personal connection with someone who has experienced it, whether it be a family member, or a complete stranger. That’s why I am committed to share my story with others to make a personal connection with as many people as I can to inform them about organ and tissue donor awareness.

When I was finally able to return to high school this year, I feel that I opened the eyes of so many students and teachers about donating their organs and tissue to help save or improve the life of someone. Now, as I am beginning college in the fall, I have a whole new group of people that I can make inspire to become donors. As I said, being a
“Walking Advertisement’ ‘ is a commitment that I can continue throughout my life time.

I cannot think of a better way to educate others and hopefully, increase the number of donors which improve and save the lives of many people. Currently, there are approximately 5,000 NJ residents and more than 120,000 overall on waiting lists. I was given a very generous gift in my donor cornea and want as many people as possible to have the same opportunity for a second chance. I feel that it is not only my duty, but my privilege to spread the word about organ and tissue donation. I know that I can make a difference and that is what I plan to do.

A Tale of Hope by Ron Oswick

I truly believe that fate brought my girlfriend, Tanya, and I together. We met four years ago, while we both worked at Morgan Stanley. It was then that I noticed the scar on Tanya’s chest. What Tanya later told me about the scar left me in disbelief.

Ron Oswick, Tanya Piccini

Ron and Tanya

Tanya had received a life-saving heart transplant. After suffering from a stroke at the age of 11, she was diagnosed with Restrictive Cardiomyopathy. After the stroke, Tanya was hospitalized for three months before her family was notified that a heart had become available. She had the transplant surgery shortly after at Columbia Presbyterian in New York City. Nineteen years later, she is doing well; she recently started a career in nursing, a life-long dream, at Mount Sinai Beth Israel in New York.

Since the beginning of our relationship, Tanya and I have participated in NJ Sharing Network’s Annual 5K Walk & USATF Certified Race every year as a way to celebrate her second chance at life and give hope to all those who continue to wait for a life-saving organ transplant.

I’m emotionally hooked. I’ve never really thought about organ donation much before I met Tanya. If it weren’t for someone donating a heart 19 years ago, I wouldn’t have the love of my life today.