Community Support is Everything

Outpouring of support for young W.Va. man battling brain cancer

Elaine Blaisdell

OAKLAND — The outpouring of emotional and monetary support from the community for 20-year-old Dylan Jones, who has been battling stage 4 glioblastoma brain cancer, has been tremendous, according to his mother Erika Graham of Oakland.

“I have been floored by the response from the community,” Graham said. “The support from Garrett County alone has been tremendous, every business has posted signs asking for prayer for him. I’ve been amazed by the support of the community, it has been really great. People all over the United States have said they are praying.”

Jones, described by others as a guy who would do anything for anybody, was diagnosed with glioblastoma in December 2012. He underwent surgery at Ruby Memorial Hospital in Morgantown, W.Va., a year ago, then underwent chemotherapy and radiation at Preston Robert Tisch Brain Tumor Center at Duke University in Durham, N.C.

While receiving treatment at Duke, Jones’ insurance coverage was exhausted and costs weren’t covered, Graham said. In October, Jones was doing great and there was no sign of the cancer, according to his mother, but around Thanksgiving he started feeling tingling and numbness on his right side. Following an MRI, it was confirmed that the brain tumor had returned and that cancer cells had spread to other areas of the brain.

“The doctors decided to change his chemotherapy and medicine to try to shrink the tumor but his body didn’t respond to any of the treatments,” said Graham. “He got home last Tuesday and we decided we have exhausted all treatment options. We are now doing alternative treatments now. We are praying and hoping for the best.”

Numerous fundraisers have been held in both Oakland and Keyser, W.Va., to help with medical expenses. Money from fundraisers currently being held will go toward the holistic treatments Jones is undergoing. Insurance doesn’t cover the costs of the alternative treatments, which cost $2,800 a month, Graham said.

“It is so very important that he doesn’t miss any dosages so we have to make sure we always have the money on hand to order what we need when we need it,” wrote Graham on the Dylan Jones Cancer Support Group Facebook page. “He is also on a very strict diet so we can only feed him organic fruits and vegetables.”

The biggest fundraiser thus far has been Dollars for Dylan, which is set up at the Wepco Federal Credit Union in Oakland. GiveForward, another fundraiser, has raised $2,915.

On the GiveForward blog, Graham said she is not giving up and asks people to do the same.

“Even though our hearts are crushed we are not giving up,” wrote Graham. “The pain I’m feeling right now as my heart aches for my son is unbearable but I’m determined not to lose hope. I don’t know what God’s plan is here but I sure hope it’s to prove he can make miracles happen.”

Jones and the news of his fight against brain cancer has gone viral on social media, so much so that #DylanJonesFight started trending on Twitter, according to Graham. Celebrities like country music singer Wynonna Judd and Duck Dynasty have retweeted #DylanJonesFight and country music artist Colt Ford has stated on Twitter that he is praying for Jones.

Other fundraisers include Thirty One, Pampered Chef, hoagie, T-shirt and window sticker sales, as well as cash bash and band benefits. A campaign on Booster.com that is selling T-shirts has garnered $490.

Basketball players from Union, Keyser and Frankfort high schools recently wore gray, which is the color for brain cancer awareness, during their respective games in support of Jones.

The Kenny Jones Band of Keyser played at Schmitt’s Saloon in Morgantown earlier this month and raised $247 for Jones, according to their Facebook page. The band has been holding various fundraisers for Jones throughout the year.

Upcoming fundraisers include a bake sale at 7-Eleven in Oakland Saturday starting at 8 a.m. and band benefit on Feb. 8 at the Black Bear Tavern and Restaurant in McHenry from 7 p.m. until closing. The Dylan Jones Cancer Fund Facebook page, which has 3,260 members thus far, has updates on additional upcoming fundraisers.

Jones is a 2011 graduate of Union High School and following graduation he worked on his grandfather, Roy Jones’ farm in Elk Garden, according to Graham.

Jones is the son of Craig Jones of Mount Storm, the stepson of Jeremy Graham of Oakland, the brother of Brianna and Wesley Jones both of Mount Storm, the great grandson of floyd “Buck” Jones of Elk Garden, the grandson of Roy and Priscilla Jones of Elk Garden and Ramona and James Hanlin of Mount Storm.

Anyone wishing to send cards or donate may send them to the The Dylan Jones Cancer Fund, 3976 Mayhew Inn Road, Oakland MD, 21550. Donations can also be made on the GiveForward website at https://www.giveforward.com/fundraiser/4yk3/dylan-jones-cancer-fund  

Source: http://www.times-news.com/local/x1724065386/Outpouring-of-support-for-young-Oakland-man-battling-brain-cancer

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A Woman’s Final Months Told Through Twitter

The Incredible Story Of A Woman’s Final Months Fighting Brain Cancer As Told Through Her Tweets

Source: http://www.buzzfeed.com/ryanhatesthis/the-incredible-story-of-a-womans-final-months-fighting-brain

Ivy Foundation Awards $3 Million Grant

Ivy Foundation awards $3 million grant, supporting brain cancer research in Arizona

December 18th, 2013
Dec. 18, 2013—The Ben & Catherine Ivy Foundation today announced a $3 million grant to the Translational Genomics Research Institute (TGen), Nemucore Medical Innovations Inc., and Barrow Neurological Institute at St. Joseph’s Hospital and Medical Center to help fund significant brain tumor research in Arizona. The collaboration of TGen, Nemucore and Barrow will pursue ways to optimize targeted therapies delivered by nanotechnology systems to treat glioblastoma, the most common and most aggressive form of malignant brain tumors.

This project is a primary example of translational research, moving laboratory findings as soon as practicable to patient care. Laboratory success should result in eventual follow-on efforts in the biomanufacturing of personalized medicine and implementation of new therapies in clinical trials.

“We are excited about this innovative approach to research, especially the collaboration between two major Arizona institutions: TGen and Barrow,” said Catherine Ivy, Founder and President of the Ivy Foundation. “Knowing there is a tangible way to develop therapies specific to the needs of patients will enhance the care and treatment of every brain tumor patient—and that is priceless.”

One of the goals of this Ivy Foundation grant is to enable TGen, Nemucore and Barrow to collaboratively align their findings toward the goal of creating new medications that can bridge the body’s blood-brain barrier, which in the past has hampered the successful implementation of intravenous brain-cancer drugs.

Each of the collaborators is a leader in their respective fields:

  • TGen’s genomic sequencing—in which all 3 billion base-pair letters of human DNA are spelled out, in order—can be used to create molecular profiles of patients and match specific therapies to diseases, providing the promise of better clinical results while minimizing side effects.
  • Nemucore specializes in the development of life-saving cancer nanomedicines, in which drugs are packaged in ways that evade cancer defenses, delivering medications that can knockout tumors.
  • Barrow, which is internationally known for its treatment of neurological disorders and treats one of the highest volumes of brain tumors in the United States, will conduct preclinical work to design nanomedicines for better access to the tumor, and will also provide the setting for clinical trials, in which patients are the first to benefit from new therapies.

“Working with the research team from the outset of the study will be helpful. We can advise them on methods or components as they develop novel formulations suitable for crossing the blood-brain barrier,” said Dr. Tim Coleman, CEO of Nemucore. “Without this type of integrated approach it would take much longer to translate these individualized investigational therapies to the clinic.”

Based on the research findings, the team would work with a strategic manufacturing partner, Blue Ocean Biomanufacturing, to develop methods to manufacture personalized medicine for the treatment of glioblastoma.

Coleman also is CEO of Blue Ocean, which is developing a cutting edge, fully flexible manufacturing facility in Peoria, Arizona. With a focus on small-batch pharmaceuticals and personalized medicine, Blue Ocean will advance breakthrough technologies for producing biopharmaceuticals with reasonable economics. This revolutionary technology will make it possible to use the genetics of a single patient’s tumor to customize and produce the medicine specific to them.

“Barrow’s collaboration with TGen and Nemucore is unique in that we will develop novel drug delivery technology that fully spans basic academic science through bench top translation and manufacturing,” says Dr. Rachael Sirianni, assistant professor at the Barrow Brain Tumor Research Center. “Our first and foremost goal is to improve the prospects for patients diagnosed with glioblastoma, and to translate our academic science into safe and effective therapies. This innovative partnership between our respective institutions and the funding provided by the Ivy Foundation will make it possible to bring forward academic research to benefit patients at Barrow and elsewhere.”

“This grant is a tremendous step in changing the way medicine is developed in Arizona,” said Dr. Michael Berens, TGen Deputy Director for Research Resources and Director of TGen’s Cancer and Cell Biology Division. “This project should enable us to develop treatments that will bridge the blood-brain barrier. I wholeheartedly thank the Ivy Foundation for their continuing support of the work we are doing to find new and effective treatments for the patients afflicted with this most aggressive form of cancer.”

Provided by The Translational Genomics Research Institute

About Ben Ivy

ben-catherine-ivy quote

Ben possessed great intellect and had the ability to communicate his thoughts and ideas to his clients. In November of 2005, Ben lost his battle with brain cancer. He had survived only four months after diagnosis. Ben set a true example of living life to the fullest. He is missed and continues to set an example for those who were fortunate enough to have known him. The Ivy Foundation was created by Ben and his wife, Catherine, in order to support medical research.

Read more about Ben Ivy and the Ivy Foundation.

Viv Raises Money for Brain Tumor Charity with a Cookbook

Brave mum Viv copes with battling a brain tumour by signing up celebrities and their recipes for her fundraising cook book

VIV MCBETH, of Prestwick was 32 when doctor’s discovered she had a brain tumour after she suffered blinding headaches which would wake her up during the night.

Viv McBeth is has raised £8000 for Brain Tumour UK from her cookbook, Viv's Kitchen.
Viv McBeth is has raised £8000 for Brain Tumour UK from her cookbook, Viv’s Kitchen.
WHEN Viv McBeth beat a deadly brain tumour, she wanted to help the doctors who saved her life.

So she signed up celebrities for a cookbook to raise cash for research into the condition through the charity Brain Tumour UK.

Lorraine Kelly, Miranda Hart and Matthew Wright are among those who supplied favourite dishes for the book, called Viv’s Kitchen, which so far has raised £8000.

Viv, now 40, found her world was turned upside down when she was diagnosed with an aggressive brain tumour, aged 32.

Scared she wouldn’t live to see her son Euan, then three, start school, she found comfort in her love of cooking.

Viv, a former financial adviser, now works full time for the Brain Tumour UK Charity.

She compiled the cookbook after meeting telly queen Lorraine at a charity awards ceremony and then wrote to a host of other household names asking for their help.

The mum-of-one, from ­Prestwick, Ayrshire, was delighted when Lorraine replied with a recipe for her mum Anne’s signature homemade chicken soup.

Contributions from comedian Miranda, TV presenter Matthew, former Scotland goalie Alan Rough and Rab C Nesbitt star Barbara Rafferty followed.

Viv is now hoping to attract more famous names for a second edition.

She said: “Home cooking was one of the things that kept me going when I was down. Making healthy meals made me feel good and I wanted to share my love of food with others.

“I couldn’t believe it when Lorraine Kelly sent me a recipe for her mum’s homemade chicken soup, so I decided to email more celebrities. Soon, Miranda Hart had sent me a recipe for a trifle and Matthew Wright another for a lovely chicken dish cooked with spinach.

“The teachers at my son’s school tell me how much they’ve enjoyed making the recipes.”

Viv first felt ill while making a banoffee pie in April 2005.

Days of blinding headaches followed and she and husband Paul, 44, began to worry when the pain became so bad she couldn’t sleep.

But they could never have prepared themselves for the devastating news that followed.

Viv said: “I thought I had a bug but I was waking Paul up at 3am asking him to massage my temples because the pain was so bad.

“Luckily, my GP took me ­seriously and they gave me a CT scan. Ten days later, I was told it was a cancerous brain tumour and I’d need ­radiotherapy.

“I was devastated – it was like being punched in the stomach. I was a young mum and I never thought anything like it would happen to me.

“I just felt so alone. I’d never heard of anyone who had brain cancer at 32 and I was terrified I would never see my son grow up.”

Viv had 33 sessions of ­radiotherapy and was given a life expectancy of five years.

But she has enjoyed good health since her treatment and has founded a support group for brain tumour sufferers in her area.

She added: “I wouldn’t say I’d had the all-clear but I’ve had good health for the last few years and feel blessed to have reached my 40th birthday.

“My tumour was only detected as it had a pocket of fluid around it that was causing the headaches.

“It could have been a different story and it’s because I’m one of the lucky ones I’ve done this.

“I had a good job but my illness made me rethink things and I realised spending time with my family was more important than going on two holidays a year.

“I had to stay positive for Euan but I was determined that cancer wouldn’t ruin my life.

“The cookbook was a lot of work but handing over a big cheque to Brain Tumour UK made it ­worthwhile.

“Research into brain tumours is underfunded, so it’s important to raise awareness of the ­condition. I hope people remember that every time they open the book.”

http://www.dailyrecord.co.uk/news/real-life/brave-mum-viv-copes-battling-2155728

37 Cancer Fighting Foods & Drinks

37 Cancer Fighting Foods & Drinks

Cancer is one of the most feared diseases, and there are so many different forms that it can feel overwhelming to try to prevent them all. If you’ve already been diagnosed as having cancer, it becomes crucial to make sure that your body is getting the nutrients it needs to help battle it back and support the body during treatment. Here are dozens of foods that have each shown to be beneficial in the fight against cancer, and preventing it from happening in the first place.

red wine fights cancer

Red Wine

There is a chemical specifically in red wine that shows promise for being a cancer fighter. It’s called resveratrol and you may have heard of it, as it has been popping up not just in red wine, but on supplement claiming to contain it. For years doctors have been recommending a glass of red wine per day for heart health. Only recently has it been discovered that there may be anti-cancer benefits. Many pills out there claim to have far more resveratrol in them than red wine has, but be sure to check the facts first.

green tea

Green Tea

Green tea is full of antioxidants, more so than other teas because it doesn’t undergo as much processing, leaving all of these important cancer fighting minerals intact. It’s worth the time and effort to incorporate this into your diet because it doesn’t just help prevent certain cancers from forming, it can help battle them back if you’ve already got them. The good news is that it’s not just one or two studies that have confirmed this, and it has also withstood the test of time and been verified on repeated tests. It’s a bonafide ally against cancer and also provides plenty of additional benefits.

ginger

Ginger

You’ll never look at this simple root the same way again once you hear how it’s able to help you on your quest to stay battle back cancer. It actually gets cancer cells to kill themselves. Pretty powerful, huh? It also has anti-inflammatory properties, so it’s working to help with cancer in two distinct ways. Scientists are even hopeful that it can help with some of the harder-to fight cancers as well. The other great feature is that it can add some delicious flavor to a meal, so it’s not very hard to start getting more of it.

turmeric

Turmeric

This superspice even gets props from the American Cancer Society for its antioxidant value. They do state that it’s too early to tell if research being conducted on it proves that these antioxidants provide anti-inflammatory benefits. But time and time again it seems that ages old wisdom gets proven right, and this is a spice that has been used for hundreds of years for its healing benefits. With all that we know about antioxidants and the way they help prevent and also assist in eradicating cancer, it’s easy enough to start using it now.

beans

Beans

It seems that you can’t go wrong when choosing your beans. Whether they’re white beans which Dr. Oz recommends, or navy or black beans, the research shows that they’re able to provide plenty of fiber and fatty acids that help provide protection against cancer growth, before it starts or helping to prevent its spread. You don’t have to go all out and start eating beans at every meal in order to reap the benefits. You simply start adding roughly half a cup just a couple of times a week and you’ll be covered.

dark chocolate

Dark Chocolate

The antioxidants in dark chocolate have only recently made the news as being a healthy thing to have in your diet. For years it was thought that chocolate only made you fat and was a form of sweet that was bad for your health. This is still true for milk chocolate, and the healthy benefits only apply to dark chocolate. The less processed chocolate you can find, the better, as many companies like to tinker with it, it can be hard to find it in an untouched form. Look for pure and organic dark chocolate, and satisfy your craving without going overboard.

Read more: http://bembu.com/cancer-fighting-foods

A Scientific Breakthrough for Brain Tumors in Children

Stanford: Scientists Illuminate Brain Tumors in Mice

With the use of a “molecular flashlight” scientists hope to target tumors medulloblastomas in children one of the most devastating of the malignant childhood brain tumors.

Jennifer Cochran and Matthew Scott have created a bioengineered peptide that has been shown in mice to provide better imaging of a type of brain tumor known as medulloblastoma. Credit John Todd.
Jennifer Cochran and Matthew Scott have created a bioengineered peptide that has been shown in mice to provide better imaging of a type of brain tumor known as medulloblastoma. Credit John Todd.

In a breakthrough that could have wide-ranging applications in molecular medicine, Stanford University researchers have created a bioengineered peptide that enables imaging of medulloblastomas, among the most devastating of malignant childhood brain tumors, in lab mice.

The team used their invention as a “molecular flashlight” to distinguish tumors from surrounding healthy tissue. After injecting their bioengineered knottin into the bloodstreams of mice with medulloblastomas, the researchers found that the peptide stuck tightly to the tumors and could be detected using a high-sensitivity digital camera.

The findings are described in a study published online Aug. 12 in the Proceedings of the National Academy of Sciences.

“Researchers have been interested in this class of peptides for some time,” said Jennifer Cochran, PhD, an associate professor of bioengineering and a senior author of the study. “They’re extremely stable. For example, you can boil some of these peptides or expose them to harsh chemicals, and they’ll remain intact.” That makes them potentially valuable in molecular medicine. Knottins could be used to deliver drugs to specific sites in the body or, as Cochran and her colleagues have demonstrated, as a means of illuminating tumors.
For treatment purposes, it’s critical to obtain accurate images of medulloblastomas. In conjunction with chemotherapy and radiation therapy, the tumors are often treated by surgical resection, and it can be difficult to remove them while leaving healthy tissue intact because their margins are often indistinct.

“With brain tumors, you really need to get the entire tumor and leave as much unaffected tissue as possible,” Cochran said. “These tumors can come back very aggressively if not completely removed, and their location makes cognitive impairment a possibility if healthy tissue is taken.”

The researchers’ molecular flashlight works by recognizing a biomarker on human tumors. The bioengineered knottin is conjugated to a near-infrared imaging dye. When injected into the bloodstreams of a strain of mice that develop tumors similar to human medullublastomas, the peptide attaches to the brain tumors’ integrin receptors — sticky molecules that aid in adhesion to other cells.

But while the knottins stuck like glue to tumors, they were rapidly expelled from healthy tissue. “So the mouse brain tumors are readily apparent,” Cochran said. “They differentiate beautifully from the surrounding brain tissue.”

The new peptide represents a major advance in tumor-imaging technology, said Melanie Hayden Gephart, MD, neurosurgery chief resident at the Stanford Brain Tumor Center and a lead author of the paper.

“The most common technique to identify brain tumors relies on preoperative, intravenous injection of a contrast agent, enabling most tumors to be visualized on a magnetic resonance imaging scan,” Gephart said. These MRI scans are used like in a computer program much like an intraoperative GPS system to locate and resect the tumors.

“But that has limitations,” she added. “When you’re using the contrast in an MRI scan to define the tumor margins, you’re basically working off a preoperative snapshot. The brain can sometimes shift during an operation, so there’s always the possibility you may not be as precise or accurate as you want to be. The great potential advantage of this new approach would be to illuminate the tumor in real time — you could see it directly under your microscope instead of relying on an image that was taken before surgery.”

Though the team’s research focused on medulloblastomas, Gephart said it’s likely the new knottins could prove useful in addressing other cancers.

“We know that integrins exist on many types of tumors,” she said. “The blood vessels that tumors develop to sustain themselves also contain integrins. So this has the potential for providing very detailed, real-time imaging for a wide variety of tumors.”

And imaging may not be the only application for the team’s engineered peptide.

“We’re very interested in related opportunities,” Cochran said. “We envision options we didn’t have before for getting molecules into the brain.” In other words, by substituting drugs for dye, the knottins might allow the delivery of therapeutic compounds directly to cranial tumors — something that has proved extremely difficult to date because of the blood/brain barrier, the mechanism that makes it difficult for pathogens, as well as medicines, to traverse from the bloodstream to the brain.

“We’re looking into it now,” Cochran said.

A little serendipity was involved in the peptide’s development, said Sarah Moore, a recently graduated bioengineering PhD student and another lead author of the study. Indeed, the propinquity of Cochran’s laboratory to co-author Matthew Scott’s lab at Stanford’s James H. Clark Center catalyzed the project. “Our labs are next to each other,” Moore said. “We had the peptide, and Matt had ideal models of pediatric brain tumors  —mice that develop tumors in a similar manner to human medulloblastomas. Our partnership grew out of that.”

Scott, PhD, professor of bioengineering and of developmental biology, credits the design of the Clark Center as a contributor to the project. The building is home to Stanford’s Bioengineering Department, a collaboration between the School of Engineering and the School of Medicine, and Stanford Bio-X, an initiative that encourages communication among researchers in diverse scientific disciplines.

“So in a very real sense, our project wasn’t an accident,” Scott said. “In fact, it’s exactly the kind of work the Clark Center was meant to foster. The lab spaces are wide and open, with very few walls and lots of glass. We have a restaurant that only has large tables — no tables for two, so people have to sit together. Everything is designed to increase the odds that people will meet and talk. It’s a form of social engineering that really works.”

Scott said he is gratified by the collaboration that led to the team’s breakthrough, and observed that the peptide has proved a direct boon to his own work. About 15 percent of Scott’s mice develop the tumors requisite for medulloblastoma research. The problem, he said, is that the cancers are cryptic in their early stages.

“By the time you know the mice have them, many of the things you want to study — the genesis and development of the tumors — are past,” Scott said. “We needed ways to detect these tumors early, and we needed methods for following the steps of tumor genesis.”

Ultimately, Scott concluded, the development of the new peptide can be attributed to Stanford’s long-established traditions of openness and relentless inquiry.

“You find not just a willingness, but an eagerness to exchange ideas and information here,” Scott said. “It transcends any competitive instinct, any impulse toward proprietary thinking. It is what makes Stanford — well, Stanford.”

The Stanford Center for Children’s Brain Tumors at Lucile Packard Children’s Hospital is supporting ongoing work by the group to translate the new technology into patient care. Additional funding came from the Wallace H. Coulter Foundation, the V Foundation for Cancer Research, the James S. McDonnell Foundation, the Stanford Cancer Institute, the National Science Foundation, a Stanford University graduate fellowship, a Siebel Scholars fellowship, a Gerald J. Lieberman fellowship, the California Institute for Regenerative Medicine and the Stanford Child Health Research Institute.

Other Stanford co-authors were postdoctoral scholar Jamie Bergen, PhD; medical student Yourong Sophie Su; and life science research assistant Helen Rayburn.

Glen Martin is a freelance writer in Santa Rosa, Calif., for the School of Engineering’s communications office.

Courtesy of the Stanford News Service

For more information: http://paloalto.patch.com/groups/around-town/p/stanford-scientists-illuminate-brain-tumors-in-mice