Tag: Mark

Local Charity Aims To Cure Deadly Pediatric Cancer With Star Power


 

We love great non-for-profit work, for the eighth year in a row, New York City-based not-for-profit 501(c)(3) The Cristian Rivera Foundation is gathering celebrities, supporters and donors to raise money toward a groundbreaking clinical trial aimed at curing Diffuse Intrinsic Pontine Glioma (DIPG).

The eighth annual Cristian Rivera Foundation Celebrity Gala will be held at Broad Street Ballroom in Manhattan on Wednesday, November 30. The foundation namesake Cristian Rivera was only 4 years old when he was diagnosed with the rare pediatric brain stem tumor, which generally affects children between the ages of 1 and 9. Approximately 200 children are diagnosed with DIPG each year in the United States and most only survive for 3 to 18 months after diagnosis.

Through auction items, ticket sales and more, the eighth annual Cristian Rivera Foundation Celebrity Gala will raise money in support of a clinical trial at Memorial Sloan Kettering Cancer Center and Weill Cornell Medical College that officially got underway on May 1, 2012, thanks to the more than $700,000 in donations from the

Cristian Rivera Foundation to date. Spearheaded by Dr. Mark Souweidane, the Director of the Weill Cornell Pediatric Brain and Spine Center, this trial is the first of its kind to use convection-enhanced delivery to administer radio immunotherapy to children with an otherwise incurable tumor.Dr. Souweidane has found a way to operate on a tumor that had, until now, been deemed inoperable. Dr. Souweidane has developed a safe method for drug delivery to these tumors by a highly innovative surgical procedure. Up until this time surgery has played no role in the treatment plan for these children with DIPG. This procedure involves implanting a small hair-like device into the center of the tumor and then using a slow constant flow of drug directly into the involved brain stem. The Cristian Rivera Foundation is proud to support Dr. Souweidane’s important research.

The eighth annual Cristian Rivera Foundation Celebrity Gala will be hosted by Cristian Rivera Foundation Board of Director and Anchor of the award winning NBC’s “Today in New York”, Darlene Rodriguez. The event kicks off at 6pm with red carpet arrivals from esteemed guests and foundation committee members. Tickets are sold out and include passed hors d’oeuvres, five hours of open bar, and dinner provided by Celebrity Chefs Alex Garcia, a committee member of the Cristian Rivera Foundation. There will also be live and silent auctions offering one-of-a-kind items and experiences.

The eighth annual Cristian Rivera Foundation Celebrity Gala will begin at 6 PM and end at 11 PM on Wednesday, November 30th. The Broad Street Ballroom is located at 41 Broad Street in the Financial District. Sponsorship packages and ads to be displayed in the program are still available for purchase. The Cristian Rivera Foundation is accepting donations in the fight against DIPG. All contributions are tax-deductible and critical to finding a cure for this disease and assisting children and families in their ongoing fight against DIPG.

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Three-Time Winner: Dr. Mark Souweidane Extends His Fight Against DIPG

 

In a new milestone in the fight against DIPG, Dr. Mark Souweidane this week performed a direct infusion of a cancer-fighting drug into the brain of a young patient — for the third time. The child was the first ever to receive three infusions, all at the highest dose level in the trial.

The six–year–old, who was diagnosed with DIPG in January of this year, joined Dr. Souweidane´s clinical trial in June, when he was treated with an interstitial infusion (also called convection–enhanced delivery, or CED) of a drug intended to stop DIPG´s usual relentless progression. By delivering the drug directly into the tumor site, Dr. Souweidane avoids the difficulty of getting that drug across the defensive blood-brain barrier. (See more about the trial.) The child received a second infusion in July, and then was treated for a third time this week.

“He´s recovering beautifully,” said Dr. Souweidane of the patient. “An MRI immediately after the infusion showed excellent drug distribution in the brain stem and no unexpected findings. More importantly, he is himself. When I spoke to him the day after his treatment and asked what he wanted to be for Halloween, he told me he wanted to be Darth Sidious.”

Several children have been treated twice in the trial, but Dr. Souweidane says this child was doing very well, with no disease progression, which boded well for a third treatment. The patient’s parents were also persistent in their drive to have their child treated again.

“They´re already asking about a fourth treatment,” says Dr. Souweidane. The first phase of the trial ended this summer, when the 27th and final patient was infused for the first time, but the FDA has approved repeated treatments as an extension of the trial.

It´s too soon yet to tell whether and how the repeated infusions will affect the ultimate course of this uniformly fatal disease. But Dr. Souweidane says there’s no reason why other children who were treated already, even at the maximum dose level, can´t be treated again. He´’s energized by these latest treatments, and is already looking ahead to the future.

“Each of the three infusions contained the seventh and highest dose level tested in this trial,” says Dr. Souweidane. “The ability to tolerate three infusions in such a short time, and of the maximum dose, paves the way for one of the possible next steps in this avenue of investigation, which could be to implant an infusion system to deliver the drug without repeated surgery.”

Whatever the next steps are, Dr. Souweidane promises to be at the forefront of the research.

Read the blog of Three-Time Winner: Dr. Souweidane Extends His Fight Against DIPG, click the link belowweillcornellbrainandspine.org/in-the-news/three-time-winner-dr-souweidane-extends-his-fight-against-dipg

Meet Lisha, Lisha was diagnosed with D.I.P.G. almost 4 years ago!

lishmri

 

Lisha is a patient of Dr. Mark Souweidane at Cornell Weill Medical Center and currently enrolled in OUR trial to find a treatment and eventual cure for D.I.P.G.

On Wed, September 21st, 2016, we learned that the results from Lisha’s last MRI were stable with no growth!

Lisha is living proof that the Cristian Rivera Foundation along with Dr.Mark Souweidane and his team at Weill Cornell are making strides in finding a cure for D.I.P.G.

Please help us cure this disease by making a tax deductible donation and raising awareness about our small foundation that is doing big things in the Cancer Community.

Dr. Mark Souweidane on Humans of NY

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Humans of NY has been doing a 2–week series on pediatric cancer (patients, families, providers) at Memorial Sloan Kettering. Mark Souweidane was interviewed for the series on Tuesday and his segments were posted on Wednesday. It has been an amazing phenomenon for two straight days now – literally hundreds of thousands of comments, likes, shares, and a veritable outpouring of support and love for Mark and his work. You really have to see it to believe it – and it’s truly amazing to read the comments and see the project through the eyes of people hearing about it for the first time.

To Read About it, click the link below www.humansofnewyork.com/post/144608280536/44-my-childhood-was-building-things-model

Marc Anthony, Henry Cárdenas & Friends Cordially Invite you to the First Annual Changing Lives, Building Dreams Gala Dinner to Benefit MAESTRO CARES FOUNDATION

 

Follow Here To Purchase Tickets

John “Gungie” Rivera Gives Dr. Mark Souweidane Gifts and Donation from the Fifth Annual
Cristian Rivera Foundation Celebrity Gala

 

Cristian Rivera Foundation founder John “Gungie” Rivera recently paid a visit to personally give Dr. Mark Souweidane a check for the $100,000 pledged to his research at the Fifth Annual Cristian Rivera Foundation Celebrity Gala. The Cristian Rivera Foundation has been one of Dr. Souweidane’s main supporters and donations from the foundation have been instrumental in getting his groundbreaking clinical trial off the ground. Dr. Souweidane was happy to accept not only the donation check but also two surprise gifts from the Fifth Annual Cristian Rivera Foundation Celebrity Gala—an Andy Pettite-autographed baseball, for which John “Gungie” Rivera outbid him by $50, and a painting of Cristian, painted live at the Gala by Japanese artist Pisu, for which Cristian Rivera Foundation Committee Member Andy Epstein outbid him by $100. Pisu has done live paintings at the Gala every year since the Third Annual Gala. The Cristian Rivera Foundation is proud to give Dr. Souweidane all of these things to show our support as he continues his work toward a cure for DIPG.

John “Gungie” Rivera Receives Exciting News from DIPG Patient

 

Today, Cristian Rivera Foundation founder John “Gungie” Rivera received great news from Denise Downing, whose daughter Caitlin was the first patient in Dr. Mark Souweidane’s clinical trial. At the Fourth Annual Cristian Rivera Foundation Celebrity Gala, where Denise and Caitlin were guests of honor, Denise tearfully shared her story with the crowd and expressed her hope that her daughter would be readmitted into the trial while there was still time to help her. She called today to share the amazing news that her daughter has received the approval she needed and Denise thanked the Cristian Rivera Foundation for their help in making it happen

Dr. Mark Souweidane operates on 2nd child in new clinical Trial

 

The Cristian Rivera Foundation is pleased to announce that Dr. Mark Souweidane, leading pioneer of the DIPG clinical trials at Memorial Sloan Kettering Cancer Center and Weill Cornell Medical Center, has just operated on the trial’s second patient today, Tuesday, July 17th! This clinical trial has been making great strides in the battle against DIPG, providing hope for families who previously had none. Dr. Souweidane operated on the first patient of the trial on Monday, May 1st and the beautiful 4-year-old girl has been doing surprisingly well. We are so proud to have helped fund this groundbreaking clinical trial, one that we hope will lead to finding a cure for DIPG. Currently, DIPG is an incurable disease which claims the lives of 200-300 children between the ages of 1 and 9 in the United States each year, a statistic we hope to abolish in the future. Full Steam Ahead!

Milestone Clinical Trial for DIPG Approved

Dr. Mark Souweidane, Director of Pediatric Neurological Surgery, has received FDA approval for a clinical trial for young patients diagnosed with Diffuse Intrinsic Pontine Glioma (DIPG). Dr. Souweidane is the Principal Investigator on the clinical trial, which will use a novel surgical technique (convection-enhanced delivery, or CED) to deliver a tumor-fighting agent directly to the site of the glioma, bypassing the blood-brain barrier that prevents most drugs from reaching these deadly brain stem cancers in children.

The trial will use CED to deliver a therapeutic agent called 124I-8H9 directly to the tumor site using a surgically placed infusion cannula. The agent consists of the 8H9 antibody, which is produced by mice and has been shown to attack many kinds of tumors, combined with the radioactive substance 124I. In studies on other kinds of cancer, 124I-8H9 has delivered a one-two punch, with 8H9 binding to the tumor and 124I killing the cancer cells with radiation. The procedure has been tested safely in animals, but this clinical trial is the first time CED has been used to administer 124I-8H9 to a human brain.

Initial patients will be treated with a small dose of 124I-8H9 and monitored for side effects. As the study progresses, new patients will be treated with increasing doses as Dr. Souweidane monitors the safety and effectiveness of each dosage. The study is expected to last for one to two years, with a minimum of 12 DIPG patients between the ages of 3 and 21 enrolled and monitored.

Dr. Souweidane has been working on DIPG research for more than a decade, and preparing for this clinical trial for much of that time. His dedication to finding hope for his patients has been unswerving, and this trial represents an enormous leap forward in DIPG research.

“This trial is about renewed hope,” says Dr. Souweidane. “It’s a departure from the standard, ineffective, therapy, and has the potential to create a whole new paradigm in brain tumor treatment. Delivering drugs intravenously hasn’t worked because of the blood-brain barrier – to get even a small amount of medicine to the tumor we need high doses of chemotherapy, which is toxic to the rest of the body. But placing the agent outside the blood vessels, directly into the tumor, greatly reduces that toxicity while maximizing the attack on the tumor itself.”

This new approach represents a ray of hope for families facing the diagnosis of DIPG. This rare brain tumor has been uniformly fatal, made all the more heartbreaking by its propensity to strike very young children. The tumors are inoperable due to their ill-defined borders as well as their position in the delicate pons area of the brain stem. Radiation has been the standard approach, but it is not a cure and usually extends life only by a short time. Some 200 to 300 children in North America a year die from DIPG – usually within months of their diagnosis.

Unlike other critical diseases of childhood, DIPG has suffered from a lack of funding that has meant a complete lack of progress in survival rates. Over the past few decades, survival rates for medulloblastoma have reached 70 percent; for acute lymphoblastic leukemia the rate is now 85 percent. Over that same time, survival rates for DIPG have remained essentially at zero, as major foundations directed their support toward more common conditions. It is Dr. Souweidane’s hope that this innovative clinical trial will be a major first step in creating a survival rate for DIPG for the first time.

Dr. Souweidane has been fortunate to have the support of several organizations and groups whose gifts have provided much-needed funding to help him reach this point. He credits the Dana Foundation, The Cure Starts Now, the Cristian Rivera Foundation, the Beez Foundation, the Matthew Larson Foundation, and St. Baldick’s with being instrumental in allowing him to complete the important research needed before this clinical trial could begin.

The DIPG trial will be conducted at both Memorial Sloan-Kettering Cancer Center and Weill Cornell Medical Center, where Dr. Souweidane holds appointments. For more information about the trial, call Dr. Souweidane’s office at
212-639-7056, or visit the complete description of the trial on clinicaltrials.gov.

The Cristian Rivera Foundation mourns the loss of Samuel Tyler Kidd

Samuel Tyler Kidd

Monday January, 9 2012 was a sad day for the entire DIPG community as Heaven gained another DIPG Angel. Eleven-year-old Samuel Tyler Kidd lost his battle with DIPG at 9:30 that morning. His parents, Mark and Mindy, will always remember him as vibrant, fun-loving, caring little boy. He had a huge heart of pure gold and always smiled no matter what. Tyler put up a brave fight against DIPG and was an example of incredible courage and strength. The Cristian Rivera Foundation extends our sincerest sympathy and condolences at what is surely an unimaginably difficult time for Tyler’s family and friends. Samuel Tyler Kidd will always stay in our thoughts and prayers.