Becky’s Blog – April 23, 2013

We are less than a month away from the 2013 Julian Rock Memorial and I am filled with excitement and anticipation. We are at a new venue this year, our team is tight and working hard, our auction items are coming in fast and furious, and it promises to be a great day.

 

Why are we doing this? Don and I love and miss Julian every single day. He is never far from our thoughts. Our second child, Gunnar, looks so much like him and I often engage in wistful thinking. I wish Julian were here to play with and take care of his little brother. But Julian is everwhere, and he is Gunnar’s personal guardian angel. Gunnar smiles when he sees Julian’s picture and runs his finger over his face. It’s a lovely sight. He goes with us to the cemetery to visit his big brother and sits with us as we say a little prayer.

 

We are planning a day filled with live music from some great bands who are all very good friends of ours. Friends who reached out to us wanting to be a part of the event. We have incredible auction items from some of the heavy hitters of the music industry, all of whom were moved by our story and wanted to help. We have team members who believe in our charity so much that they are working overtime to secure more and more auction items for us. Some team members are using their talents to create one of a kind items especially for the auction. Some corporate sponsors are earmarking a percentage of fees to the Julian Rock Memorial. We love you all and are so grateful for your love, friendship, and support.

 

It’s exciting to post the latest news on the event and photos of the items as they arrive. It’s exciting to see everyone’s reactions to the latest news. We are confident we will reach our lofty goal of $20,000 this year.

 

It’s easy to get caught up in the whirlwind, but I never lose sight of the reason we are doing this. Julian is our inspiration and our guiding light and it is for him that we are so moved to raise thousands of dollars for the children of St. Jude. To lose a child is the most devastating thing a parent can go through and we are determined to help St. Jude continue to increase their patients’ survival rates by leaps and bounds so that one day no parent will have to endure this pain.

 

Please join us on Sunday, May 19 in Los Gatos and give to a very worthy cause. Enjoy the music, bid on your favorite items, and have a snack and a great afternoon. If you are unable to attend, please visit our website (www.julianrockmemorial.org) and click “donate” to contribute. Buy a commemorative t-shirt (a percentage of the cost goes to St. Jude)  and wear it to show your support (www.cafepress.com/julianthorvund). And please remember Julian and all the children of St. Jude.

Don’s Blog – February 1, 2013

As I start to plan for the 2013 Julian Rock Memorial, I look back at 2012 and I am very proud of what we accomplished. I set a stretch goal of raising $10,000 for St. Jude Children’s Research Hospital and we surpassed it. We raised over $11,000 in 2012 in Julian’s name. We were able to do this with generosity of fantastic donors, sponsors, volunteers, participants, bands, and supporters. I thank each and every one of you from the bottom of my heart. Together, we are able to make an impact on the lives of the children and families of St. Jude.

In 2012, I have watched our second son, Gunnar Matthias, grow into a very healthy toddler. I am so very grateful for every day that I have with him and feel so unbelievably fortunate for his health. I know first hand that not all families are as fortunate and it is this thought that strengthens my desire to continue to support St Jude in loving memory of Julian Joseph Thorvund.

I am looking forward to 2013 Julian Rock Memorial. We are assembling our team and will be starting our meetings in the next few weeks. We will be posting updates and news about the 2013 JRM very shortly.

I hope that you will join me in my support of this very worthy charity. Our love, caring, and generosity will make a huge impact to the children and families of St Jude.

Becky’s Blog – April 24, 2012

Julian had a severe form of arthogryposis, and had hyper flexed limbs and a malformed windpipe, disallowing him to breathe on his own. The strength he demonstrated in enduring so much pain to come to us and meet us is still staggering to me. I can see his gorgeous face and his big, beautiful, inquisitive eyes. He took in everything, as if he were committing it all to memory. He was a dream come true and the fact that he left us far too soon plunged me into such depths of pain and anguish. I honestly didn’t think I would ever climb out.

My dear friend Sandy told me about an organization called HAND (Helping After Neonatal Death). They are based in the Bay Area and held meetings close to my home. However, I knew I wasn’t ready to go into a group setting and talk about Julian. I learned that they had an online Yahoo group, which I promptly joined and read everyone’s stories of the loss of their babies. It was heart wrenching to learn just how many parents lose their precious infants and children.

I shared my story and immediately received the warmest, most beautiful e-mails from other parents, providing support and kind words. It was staggering. We exchanged photos and birthdays and formed fast friendships based on our mutual heartbreak. We talked about the pain and anguish, the difficulties in moving forward, the aching arms longing to hold our precious babies. I loved being able to tap into this cocoon of support from the comfort of my very own living room, 24/7.

I continued to read all the stories of the new members as they came in and made it a point to respond to each and every one and offer a shoulder and an ear and, hopefully, some small semblance of comfort. As my heart started to mend, I found a great deal of strength in being able to be there for other parents, sharing my story with them. The circle was complete.

I continue to correspond with some of the mothers in my original support circle and they are wonderful friendships strengthened by the most painful of bonds.

I’ve often been asked what the right thing to say is to a parent who has lost a child. Often people remain silent because they don’t know what to say or are afraid of saying the wrong thing. I always tell them that it is perfectly okay to say, “I don’t know what to say.” Be there. Listen. Remember that we will never “get over it”.  The pain will ease and eventually we will be able to smile when we think of our child, but they will always be missed and forever loved.

www.handonline.org

www.facebook.com/handonline

Don's Blog – April 3, 2012

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Don’s Blog – March 29, 2012

I am frequently asked what motivated me to start the Julian Rock Memorial.  Many people lose loved ones and do not start charity events.

Losing Julian in 2005 was devastating.  Watching my wife suffering and not being able help made me feel even more helpless.  I became incredibly depressed and stopped taking care of my health.  On March 23, 2010, one of my organs failed and I was rushed to the hospital via ambulance where I nearly died in the ICU.  I would spend the next two months recovering physically and mentally.

It was during this recovery period that I realized I had never really dealt with the loss of Julian.  I decided I wanted to do something for charity in his name; however Julian had arthrogryposis, a rare congenital disorder without a well-known charity.  About this time, my hospital bills starting arriving, totaling over $250,000.  Fortunately, I had great insurance. However, I started thinking about those without insurance and the impact that having a child with a catastrophic pediatric disease would have on them.  We had been donating to St. Jude Children’s Research Hospital since Julian’s passing, mostly because of its name and the fact that it helps children. We learned that their mission was to advance cures, and means of prevention, for pediatric catastrophic diseases through research and treatment.  Most importantly, no child is denied treatment based on race, religion or a family’s ability to pay.  I knew that my efforts would go to support St. Jude.

During my recovery, I rediscovered my love for music and started playing guitar again.  I also discovered this crazy, high-energy guitarist on YouTube, Phil X.  Phil’s passion was contagious and inspired me to pursue my enjoyment of the guitar and music.  I reached out to Phil and told him my story and asked for tips.  He provided many tips and encouraged me to create the Julian Rock Memorial and volunteered the first guitar for auction!  Obviously, Phil is an unbelievably talented guitarist, but he is also a very inspiring, kind human being and I will always be so grateful to him for believing in me.  It is no coincidence that I have met the most amazing people through Phil, people that deserve their own future blog entry.

Having chosen a charity and rediscovering my love of music and guitar, creating a Rock Auction made perfect sense.  I am very fortunate that rock icons have been so generous and donated to the Julian Rock Memorial allowing us to raise funds for St. Jude Children’s Research Hospital.

It’s a great feeling being able to help the children and families of St. Jude.  An unexpected benefit of the charity has been my ability to meet and bond with other parents that have suffered loss or hardships with their children.  I look forward to the continued growth of the charity and helping both groups.

Becky's Blog – March 27, 2012

Second Annual Julian Rock Memorial will be held on May 20, 2012

Our Second Annual Julian Rock Memorial will be held on May 20, 2012 at Guitar Showcase in San Jose.  Please stay tune for more information!

 

Guitar Showcase/SMI

3090 South Bascom Avenue

San Jose, CA 95124

Certificate Received From St. Jude for 2011 Donations

Today we received a wonderful ‘Thank You’ certificate from the St.Jude Children’s Research Hospital for raising over $7,000 in 2011. Thank you so much to all our supporters this year, we couldn’t have done this without you!

Top 10 Facts About St. Jude Children’s Research Hospital

  • St. Jude Children’s Research Hospital opened on February 4, 1962 and was founded by the late entertainer Danny Thomas. Its mission is to find cures for children with cancer and other catastrophic diseases through research and treatment.
  • St. Jude is the only pediatric cancer research center where families never pay for treatment not covered by insurance. No child is ever denied treatment because of the family’s inability to pay.
  • The daily operating cost for St. Jude is $1.7 million, which is primarily covered by public contributions.
  • During the past five years, 81 cents of every dollar received has supported the research and treatment at St. Jude.
  • On average, 5,900 active patients visit the hospital each year, most of whom are treated on an outpatient basis.
  • St. Jude has 78 inpatient beds and treats upwards of 260 patients each day.
  • St. Jude is the first institution established for the sole purpose of conducting basic and clinical research and treatment into catastrophic childhood diseases, mainly cancer.
  • In 1962, the survival rate for acute lymphoblastic leukemia (ALL), the most common form of childhood cancer, was 4 percent. Today, the survival rate for this once deadly disease is 94 percent, thanks to research and treatment protocols developed at St. Jude.
  • St. Jude has developed protocols that have helped push overall survival rates for childhood cancers from less than 20 percent when the hospital opened in 1962 to 80 percent today.
  • St. Jude was the first institution to develop a cure for sickle cell disease with a bone marrow transplant and has one of the largest pediatric sickle cell programs in the country.
  • In 2009, Parents magazine named St. Jude the No. 1 pediatric cancer care hospital in the country, based on the magazine’s survey of more than 75 children’s hospitals nationwide.
  • The current St. Jude survival rates for selected childhood cancers now include:
Diagnosis Survival Rate
Acute lymphoblastic leukemia (ALL), most common form of childhood cancer 94%
Hodgkin lymphoma (cancer of the lymph system) 90%
Medulloblastoma (a type of brain tumor) 85%
Wilms tumor (kidney tumor) 90%

How to Be a Hero – Danny Thomas, the Founder of St Jude



A HERO is a person who does special things to HELP people. Every Hero starts as a child, and every child can CHOOSE to be a HERO…

Just Like THIS one…

It was four o’clock in the morning and Amos Jacobs was fast asleep.

Suddenly, there came a scream from the front room where Amos’s baby brother had just been bitten by a sewer rat.

In those days, a rat bite almost certainly meant death.

That’s when Mrs. Jacobs promised in her heart that if her baby wold just live, she would spend a whole year begging for pennies to give to poor people.

Well, the baby did recover, and Mrs. Jacobs, who was very poor herself, did raise money for other people who desperately needed it.  She always followed through on what she promised.

When Amos grew up, he wanted to make a career in show business, because he could be a very funny man.

But times were very hard for him in the beginning. It looked like he might not make it, and he didn’t have any money.

Then, remembering his mother’s example, he decided to make a promise, too. He promised that if he became a successful entertainer, he would use his money and his influence to build a place where sick children could get better.

Well, as actors often do, Amos Jacobs changed his name. He became Danny Thomas, and eventually, he became a huge success.

Soon, Danny Thomas knew it was time to make good on his promise, and in 1962, he created St. Jude’s Children’s Research Hospital, a place where now thousands of children have gone to get the best medical care around.

And it was first made possible about a man who learned about keeping promises when he was just a child. That man was Danny Thomas, a very special hero.

And that’s what I know about the beginning of this HERO!

And you know what else? I know that YOU can CHOOSE to be a HERO too!


Danny Thomas

 

Danny Thomas is a HERO because he made sure to keep his promises, Danny Thomas promised that if he ever got rich and famous, he would help sick children to get better.

And he did. Because Danny Thomas founded St. Jude’s Children’s Research Hospital!