Spread the Word ...

The Phillips Family announced last week that the 2011 walk will be on 11/6/11.  Mark your calendar and spread the word!  We want this to be the biggest year yet!  So if you're Facebookers post it on your wall or send an email out ... and invite your friends to join in! It's never too early to get started!  

And invite them to follow our blog too! It's a great way for the Colorado supporters of the cause to unite!

Do you follow the Lustgarten Foundation on Facebook?

Stay up on latest volunteer opportunities and pancreatic cancer news from the Lustgarten Foundation by befriending them on Facebook. 

Genetic Code Deciphered for Form of Pancreatic Cancer

Lustgarten Foundation funding helps scientists crack genetic code for neuroendocrine pancreatic cancer.

 

Release Date: 01/20/2011

JOHNS HOPKINS SCIENTISTS CRACK GENETIC CODE FOR FORM OF PANCREATIC CANCER

Scientists at Johns Hopkins have deciphered the genetic code for a type of pancreatic cancer called neuroendocrine or islet cell tumors. The work, described online in the Jan. 20 issue of Science Express, shows that patients whose tumors have certain coding "mistakes" live twice as long as those without them.
"One of the most significant things we learned is that each patient with this kind of rare cancer has a unique genetic code that predicts how aggressive the disease is and how sensitive it is to specific treatments," says Nickolas Papadopoulos, Ph.D., associate professor at the Johns Hopkins Kimmel Cancer Center and director of translational genetics at Johns Hopkins' Ludwig Center.  "What this tells us is that it may be more useful to classify cancers by gene type rather than only by organ or cell type."

Pancreatic neuroendocrine cancers account for about 5 percent of all pancreatic cancers. Some of these tumors produce hormones that have noticeable effects on the body, including variations in blood sugar levels, weight gain, and skin rashes while others have no such hormone "signal."

In contrast, hormone-free tumors grow silently in the pancreas, and "many are difficult to distinguish from other pancreatic cancer types," according to Ralph Hruban, M.D., professor of pathology and oncology, and director of the Sol Goldman Pancreatic Cancer Research Center at Johns Hopkins.

For the new study, the team investigated non-hormonal pancreatic neuroendocrine tumors in 68 men and women. Patients whose tumors had mutations in three genes -- MEN-1, DAXX and ATRX -- lived at least 10 years after diagnosis, while more than 60 percent of patients whose tumors lacked these mutations died within five years of diagnosis.

The Johns Hopkins team, which previously mapped six other cancer types, used automated tools to create a genetic "map" that provides clues to how tumors develop, grow and spread.
Within the code are individual chemicals called nucleotides, which pair together in a pre-programmed fashion to build DNA and, in turn, a genome. Combinations of these nucleotide letters form genes, which provide instructions that guide cell activity. Changes in the nucleotide pairs, called mutations, can create coding errors that transform a normal cell into a cancerous one.

In the first set of experiments, the Johns Hopkins scientists sequenced nearly all protein-encoding genes in 10 of the 68 samples of pancreatic neuroendocrine tumors and compared these sequences with normal DNA from each patient to identify tumor-specific changes or mutations.

In another set of experiments, the investigators searched through the remaining 58 pancreatic neuroendocrine tumors to determine how often these mutated genes appeared.

The most prevalent mutation, in the MEN-1 gene, occurred in more than 44 percent of all 68 tumors. MEN-1, which has been previously linked to many cancers, creates proteins that regulate how long strands of DNA are twisted and shaped into dense packets that open and close depending on when genes need to be activated. Such a process is regulated by proteins and chemicals that operate outside of genes, termed "epigenetic" by scientists.

Two other commonly mutated genes, DAXX and ATRX, which had not previously been linked to cancer, also have epigenetic effects on how DNA is read. Of the samples studied, mutations in DAXX and ATRX were found in 25 percent and 17.6 percent, respectively. The proteins made by these two genes interact with specific portions of DNA to alter how its chemical letters are read.
"To effectively detect and kill cancers, it may be important to develop new diagnostics and therapeutics that take aim at both epigenetic and genetic processes," says Kenneth Kinzler, Ph.D., professor of oncology at the Johns Hopkins Kimmel Cancer Center and co-director of the Ludwig Center at Johns Hopkins.
The Johns Hopkins team also found that 14 percent of the samples studied contained mutations in a gene family called mTOR, which regulates cell signaling processes. Papadopoulos says that patients with tumors containing such alterations in the mTOR pathway could be candidates for treatment with mTOR inhibitor drugs.
"This is a great example of the potential for personalized cancer therapy," says Hruban.  "Patients who are most likely to benefit from a drug can be identified and treated, while patients whose tumors lack changes in the mTOR pathway could be spared the side effects of drugs that may not be effective in their tumors."
Papadopoulos, Kinzler, and co-authors Bert Vogelstein, Luis Diaz, and Victor Velculescu are co-founders and members of the scientific advisory board of Inostics, a company that is developing technologies for the molecular diagnosis of cancer.  They own Inostics stock, which is subject to certain restrictions under the Johns Hopkins University's conflict of interest policy. Kinzler, Vogelstein and Velculescu are entitled to shares of any royalties received by the university on sales of products related to genes described in this manuscript.

Major funding for the study was provided by the Caring for Carcinoid Foundation, a nonprofit foundation which funds research on carcinoid cancer, pancreatic neuroendocrine cancer, and related neuroendocrine cancers.  Additional funding was from the Lustgarten Foundation for Pancreatic Cancer Research, the Sol Goldman Pancreatic Cancer Research Center, the Joseph Rabinowitz Fund for Pancreatic Cancer Research, the Virginia and D.K. Ludwig Fund for Cancer Research, the Raymond and Beverly Sackler Research Foundation, the AACR Stand Up to Cancer's Dream Team Translational Cancer Research Grant and the National Institutes of Health.

Co-authors include Yuchen Jiao, Chanjuan Shi, Barish Edil, Roeland de Wilde, David Klimstra, Anirban Maitra, Richard Schulick, Laura Tang, Christopher Wolfgang, Michael Choti, Victor Velculescu, Luis Diaz Jr., and Bert Vogelstein from Johns Hopkins.

On the Web:
www.hopkinskimmelcancercenter.org
The Sol Goldman Pancreatic Cancer Research Center:
http://pathology.jhu.edu/pancreas/index.php
Science: http://www.sciencemag.org/
Caring for Carcinoid Foundation: www.caringforcarcinoid.org

Johns Hopkins Kimmel Cancer Center
Office of Public Affairs
Media Contact: Vanessa Wasta
410-955-1287
wasta@jhmi.edu

Steelers, Jets Bring Foes Together as Friends Before Sad End

No matter who you are cheering for on the field today, here's an incredible story you must read.  A story of how a deadly disease introduced rivals to friendship.

T.J. Jenkins and Scott Wedell never actually met, but they disliked each other from the start.

One loved the Steelers, the other loved the Jets. That sparked a blogging battle so intense it would make Rex Ryan blush.

"We were at each other's throats about everything," Jenkins said.

Tensions eventually cooled, then the rivals grew to respect each other. And finally this week, when the teams they love most were preparing to battle for the Super Bowl, Jenkins crumpled to the floor.

His blogging rival was dead. Wedell was only 19.

In his honor, Jenkins will lay down his arms this Sunday. There will be no typing during the game. Jenkins may not even be able to cheer.

"Usually if the Steelers lost the AFC Championship Game, the loss would devastate me," he said. "It's not going to hurt as much this year if they lose."

It's trite to say sports aren't life or death, and how people take them too seriously. But this story is a reminder how sports can help break down serious walls. From great ones like apartheid to small ones like the one these two super-fans overcame.

"He didn't have any enemies," Ray Wedell said of his son.

Of course, Scott never really let his father in on his computerized passion. The Internet has unleashed millions of passionate voices. Wedell went by "NYSR," short for New York Sports Rule.

Those are fighting words where people believe New York sports don't rule. Like in Canton, Ohio, where Jenkins was raised to love the Steelers. His website, Steel Hurtin', is dedicated to covering all things Yellow and Black.

Wedell was raised in Fairfax, Va. He loved sports and could rattle off stats and facts like Rain Man. He played basketball in high school and finished his sophomore year by scoring 24 points in a game.

Not long afterward, he noticed a lump in his leg. It turned out to be a tumor. Wedell had rhabdomyosarcoma, a rare form of cancer that infects muscles and other connective tissue.

Thus began the battle. Chemotherapy, radiation, blood counts, vomiting, wheelchairs. The cancer went into remission, only to cruelly reappear. Through it all, Wedell never stopped loving life, loving the Jets and loving to electronically chat about them.


That's a strange thing about the Internet. People talk more to strangers across the world than they do their neighbors. The conversations can get nasty and personal. Just check out the exchanges on SEC football or English Premier League sites.

Wedell and Jenkins had progressed from being at each other's throats to actually speaking on the phone. They'd call before games, insult each other's teams and generally give each other a hard time.

Wedell eventually let on about his illness. Whatever animosity remained between NYSR and Canton's leading Steelers fan vanished. Jenkins asked Wedell to explain his condition and posted it on his website. Through all the harrowing details, there was hardly a hint of self pity.

"I was reallyyyy looking forward to my junior and senior seasons playing," Wedell wrote. "That's one thing I think about a lot and it kind of gets at me that I didn't get a chance to play again."

That's as close to feeling victimized as he allowed for himself.

"He was selfless. He took the stance that whatever was going to happen to him was going to happen, and to live each day to the fullest," Jenkins said. "You could tell he was nervous and scared at times, but he would never tell anybody."

By last week, he couldn't tell anybody. Wedell went to the hospital in grave condition. He was barely conscious most of the weekend. But at about 4:30 p.m. ET Sunday, his father nudged his shoulder.

The Jets and Patriots were coming on TV.

"He didn't hate many things in life," Ray Wedell said, "but he hated Bill Belichick and Tom Brady."

What self-respecting Jets fan wouldn't? Scott's eyes widened as New York dominated the first half.

"I can't believe we're only ahead 7-3," he told his father near halftime. "We're so much better than them."

He laughed like a carefree 19-year-old when Shonn Greene scored a touchdown and pretended to lie down and fall asleep in the end zone.


Scott with Don La Greca and Greg Buttle of 1050 ESPN Radio NY during a Jets game in 2008.

---

"I can't wait to play the Steelers," he said.

Then he went back to sleep.

"He never really regained consciousness," Ray Wedell said.

Scott died Tuesday. His form of cancer hasn't had the treatment advances many other types have. He'd hoped to hang on long enough for a promising new drug that the FDA hasn't approved yet.

"He didn't lose the game," Ray said. "Time just ran out."

Scott wanted to raise awareness and raise money for research. His father hopes the NFL will seize this opportunity, and maybe have Ryan and Mike Tomlin tape a commercial asking for donations.

There are a lot of sports fans who could use the dose of perspective. But in the Internet battlefields, the unlikeliest friendships can flourish.

The Wedell family didn't even know of Scott's ties with Jenkins until a couple of days ago, when somebody sent a link to Steel Hurtin'. Jenkins had found out about Scott's death when he checked his Facebook page.

"I saw 'Rest in peace,'" he said.

That's when he collapsed to the floor. So instead of blogging throughout Sunday's game, Jenkins plans to simply watch and remember.

"He'll have the best seat in the house," Jenkins said.

If the Jets win, he'll be happy for the friend he never met.

If the Steelers win, Scott Wedell will probably feel the same way.

The #1 Pancreatic Cancer Risk Factor

 Pancreatic cancer is the cancer doctors fear most, but a new breakthrough could change everything. Dr. Oz investigates a vaccine that could spell hope for those suffering.  Worried about your risk? Here are 4 of the 5 top risk factors for pancreatic cancer:

1. Smoking
2. Family history
3. Race
4. Soda drinker

What's #5? Learn more on Dr. Oz's site ...
http://www.doctoroz.com/videos/1-pancreatic-risk-factor

Dr. Oz

Set your DVR: Wednesday's Dr. Oz show to feature segment on pancreatic cancer. Check your local listings for air times and stations. 

 

Here's a link to a show he did on the topic in 2009.  

http://www.doctoroz.com/videos/pancreatic-cancer-silent-deadly-killer

THANK YOU!

Congratulations and thanks to the Bergenfield, NJ high school basketball community for a successful Hoops 4 Hope fundraising and awareness event on December 19.

The high school basketball community came together recently to raise funds for pancreatic cancer research, while getting in some early-season games.

The Dec. 19 Hoops 4 Hope Challenge was dedicated to Dr. Steven J. Kaminsky, a principal in the Bergenfield district, who succumbed to the disease this past April.

Bergenfield coach Erik Olson is the person that set up the tournament. Olson worked for Kaminsky while he was principal at Lincoln School.

"He was the greatest mentor I ever could have asked for," Olson said "We connected. We both lived for the moment and to be positive to people; to look out for the best interests of the whole. Our team wanted to work for the treatment and the cure while working hard for Dr. K."

LUSTGARTEN FOUNDATION

The funds raised will go to The Lustgarten Foundation, founded in 1998 with the help of Cablevision, in honor of Marc Lustgarten, a Cablevision executive who died from pancreatic cancer.

"Marc Lustgarten taught with Steven [Kaminsky]," said Kaminsky's widow, Janet. "In 1968 he quit to become a lawyer and went on to work for a 'start-up' company called Cablevision."

She added that it is necessary that the funds are sent directly to The Lustgarten Foundation, to ensure that the money goes for pancreatic cancer research.

"If you give to the cancer general fund there is not an even distribution," she said. "Pancreatic cancer is on the bottom even though it is the fourth leading cause of death from cancer."

curePC

According to Cablevision's website, in late 2008, Cablevision and The Lustgarten Foundation together launched curePC, a public awareness campaign in support of the fight against pancreatic cancer.

As part of this campaign, Cablevision made a multi-year commitment to underwrite all of The Lustgarten Foundation's administrative costs to ensure that 100 percent of every dollar donated to the Foundation goes directly to pancreatic cancer research. Today, the Foundation is the nation's largest private supporter of pancreatic cancer research.

Olson said that after Kaminsky was diagnosed the team said they wanted to do something in order to "give back."

"He was a Bergenfield person," Olson said. "We wanted to have a good event for the girls and the community. The No. 1 priority is to give back and be thankful for what you have. Melanie [Eskin] (a senior captain on the team) asked if there was something we could do. The event was planned before he passed. We knew it would probably be in his memory. Any day I can do something to preserve his memory is a good day for me."

LOTS OF HELP

Olson got a lot of help from his team in getting the tournament up and running. In addition to Eskin, the Miranda twins, Stephanie and Vicky, were instrumental in taking care of some of the details.

"Mel (Eskin) was the mastermind," Stephanie said. "She asked us to help. We met, exchanged ideas. We wanted to do something nice. He (Kaminsky) was a great guy - everyone says so."

Vicky worked with the graphics department at BHS to produce the program, which, she admits, "took a long time."

"We had an idea what teams we wanted [in order] to have good games," Vicky added. "Olson got the teams."
Olson invited Holy Angels, New Milford, Old Tappan, Park Ridge, Pascack Valley, Ramapo, River Dell, Rutherford and Tenafly to participate in the tournament. All were happy to take part.

"Erik called us and asked us to get involved," said Old Tappan coach Brian Dunn. "They did so much for us in previous events that we wanted to help out. I love that basketball is part of it. It turns it into something beneficial, which is great."

"Getting invited to this is an honor, a great compliment," said Pascack Valley coach Jeff Jasper, who will host a tournament for juvenile diabetes and autism later this season. "It is a privilege to be here. It's a good basketball situation and a great opportunity to give back. All causes are just. Everybody has difficulties. Asking the basketball community to pitch in for any cause shows the kids and the community that there is more to this than bounce passes, blocking out and jump shots."

'IT MEANS A LOT'

Some of those involved have a special reason to want to participate. New Milford coach Mike Kilgallen's father died of cancer shortly after Mike was named coach at Midland Park, his first head coaching assignment.

"We are thrilled to be part of such a great thing," Kilgallen said. "It's great to come together and use this game as a vehicle to get the word out that pancreatic cancer research needs funds. It's such an honor to be here with the high school basketball community of coaches and teams."

"I love that it means a lot," said Old Tappan senior Abbey Fallon. "My grandmother was diagnosed with breast cancer. (She is all right now).

It makes everyone aware of what is going on outside of our little world. Cancer is a big deal."
The tournament was a great success and at press time the proceeds are still being counted. The team plans to make it an annual event and getting teams to come back should be easy to accomplish.

"We are playing here and at Park Ridge Jan. 8 for breast cancer awareness," said River Dell coach Lou Wejnert. "We normally play two [tournaments] a year. The kids are pretty tuned into this, what they are doing and why. They realize cancer strikes anyone at anytime."

"It was nice that everyone came out to support this great cause," Stephanie Miranda said. "It was a great thing to have here. We want to make it nice going forward. We want to keep it a success."

Lustgarten Awareness Night Out

Join Lustgarten on Janury 14 at the Times Union Center in Albany, NY for an "Awareness Night Out" with the Albany Devils, as they battle the Binghamton Senators in support of pancreatic cancer research. 

 

 

Einstein-Montefiore Researcher Will Test Nanoparticles Against Pancreatic Cancer

A five-year, $16-million grant from NCI will support pancreatic cancer research at Albert Einstein College of Medicine of Yeshiva University and Montefiore, the University Hospital and Academic Medical Center for Einstein. 

 

A five-year, $16-million grant from the National Cancer Institute will take advantage of specialized expertise developed by scientists at Albert Einstein College of Medicine of Yeshiva University and Montefiore, the University Hospital and Academic Medical Center for Einstein. The research – carried out by a group of five institutions, including Einstein, that comprise the Texas Center for Cancer Nanomedicine – could lead to novel ways to diagnose and treat pancreatic and ovarian cancer using nanoparticles.

 

Nanoparticles are engineered materials that are 100 nanometers or less in size. (A nanometer is one billionth of a meter.) Nanoparticles impregnated with drugs are called nanomedicines.

“We will be investigating nanomedicines for both imaging and treating pancreatic tumors,” said Einstein-Montefiore principal investigator Steven Libutti, M.D., professor and vice chair of surgery at Einstein and Montefiore, director of the Montefiore-Einstein Center for Cancer Care, and associate director for clinical services of the Albert Einstein Cancer Center. “Our part of the consortium is developing nanoparticles that will specifically target unique aspects of the blood vessels found in pancreatic adenocarcinomas and pancreatic neuroendocrine tumors.”

Pancreatic cancer is the fourth-leading cause of all cancer deaths. Currently, there is no test for early detection of the disease, which killed nearly 37,000 people in 2010. Only 5.6 percent of people diagnosed with pancreatic cancer live for five years or longer, according to the National Cancer Institute.
Dr. Libutti has developed mice that are genetically programmed to form pancreatic tumors that mimic those seen in people. These mice will be used for testing a variety of nanoparticle-based drugs produced by other collaborators. Such studies will reveal whether the particles can home in on disease locations and deliver therapeutic benefits. Dr. Libutti’s clinical practice involves the surgical management of patients with cancer, including those with pancreatic cancer. A main focus of his research is the formation of new blood vessels that nourish tumors.

Identifying the most promising nanoparticle-based drugs for pancreatic as well as ovarian cancer will take several years. Clinical trials are not likely to begin until the end of the five-year project.

In addition to Einstein the other institutions that are members of the Texas Center for Cancer Nanomedicine involved in the nanotech consortium are the University of Texas MD Anderson Cancer Center, the University of Texas Health Science Center at Houston, the Methodist Hospital Research Institute, and Rice University.