Don’t Forget September = Childhood Cancer Awareness

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September is childhood cancer awareness monthFor those that may not be aware, the month of September is Childhood Cancer Awareness Month. But what exactly does that mean? This year alone the parents of almost 16 thousand kids all over the United States will receive the heart-wrenching news from the doctor that “your child has cancer”. Twenty to twenty five percent of those diagnosed will not survive. These statistics are hard to swallow for anyone. However, during the month of September, parents, caregivers, families, researchers and charities around the US look at September as a time to remember those children who lived a brief life due to the disease, and re-dedicate themselves to finding ways to combat the disease and give those that are ill a bit more comfort while they are here.

Many children’s hospitals and research institutes sell awareness month kits that include ribbons, pins, magnets and other tokens of recognition for the wearer, while profits from the purchase are donated to the cause. In addition to small trinkets associated with childhood cancer awareness, communities are encouraged to show their support by sponsoring or hosting different events. Schools, parents, sports’ teams are all encouraged to participate and bring awareness to this cause in such a way.

If you are interested in showing your support, but aren’t sure where to start, there are a ton of ways that you can get involved. From sharing informational videos on your social media profiles, to making a donation, to learning how to be an adult advocate, running a 5k, shaving your head to raise money, or jump rope for as long as you want, all it really takes is a little bit of imagination and research to find a way to contribute. Do your homework and find out what kinds of events are going on in your area to see if you would be interested in joining that, or if you don’t see anything that works for you, make your own event. Set up a way for others to donate to the cause as you work your way through some sort of challenge.

For more information on creating your own fundraiser see this page and remember that Crowdrise, Kickstarter, Indiegogo, invested.in, are great platforms for accepting donations.

 

Great Alternative for Children Suffering from Chron’s

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adrian rubin doctorAn inspiring story out of the Seattle Children’s Inflammatory Bowel Disease Center, suggests that an alternative to the traditional route of medications and steroids may be available for children suffering from Chron’s Disease.

The Crohn’s and Colitis Foundation of America, reports that as many as 700,000 Americans could be affected by the chronic conditions brought on by Crohn’s. In spite of a seeming spike in numbers of people affected by this disease, it’s currently unknown exactly what it is that causes an individual to have Crohn’s. However, many doctors believe Crohn’s occurs because something goes awry between a child’s genetic makeup, their immune system and their microbiome.
According to gastroenterologist Dr. David Suskind of the Seattle Children’s Hospital, roughly, “… 25% of Crohn’s diagnoses occur during childhood,” he then claims that “Typically we see two spikes in onset, one in the 8 to 10 age range and the second in the early teens. The incidence also seems to be increasing. Although we’re not sure why, we think it might be related to environmental factors like diet and the overuse of antibiotics.”
Although the cause has yet to be clearly established through data sets and long-term studies, these doctors who observe childhood cases of Chron’s disease must have some insight behind their hunches as to what it is that can affect the appearance and symptoms of this disease.
New Treatments
Doctors at Seattle Children’s Inflammatory Bowel Disease Center are perfectly comfortable offering a host of treatment options that are tailored to the specifics of the patient, Dr. Suskind makes wure that a novel nutritional therapy is also an option.

Currently, diet is not considered a traditional part of the treatment options, yet the doctors at this location, feel it needs to be included in the potential treatment options as it may work for some patients.
According to Dr. Suskind, “If you look at the standard treatment for IBD at most centers, diet doesn’t play a role. What we do at Seattle Children’s is very different.” He went on to say, “We’re finding that for some patients, diet can be the key. We start by giving parents information about the pros and cons of all treatment options, and then ask them what they want to try. We’re supportive of either medication or diet, because we know that different treatments work for different patients. We just want to ensure we’re aligned with what works best for the family.”

The nutritional therapy offered at Seattle Children’s provides 2 dietary plan options for patients. The first is a diet consisting of 100% formula. However, the second option is a very particular carbohydrate diet and focuses on fruits, vegetables, and nuts. This SCD diet removes lots of foods and ingredients very typical of an American diet, and Seattle Children’s is one of the only centers in the country that offers this option to patients as a treatment option for both Crohn’s and ulcerative colitis.

JLaw surprises patients at shriners canada

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In recent celebrity news, Jennifer Lawrence- star of the Hunger Games, paid a visit to a Shriners Childrens Hospital in Montreal. The actress is currently filming the newest installment of the X-Men series, directed by Bryan Singer. While stationed in Canada, Lawrence took photos with both the children and the staff members at the hospital. In addition to occasionally dropping in to visit with the patients at the childrens’ hospital, Lawrence is formally involved with other philanthropical pursuits.  Lawrence has been linked with organizations like DoSomething.org, Feeding America, the Screen Actors Guild Foundation, The Thirst Project and the World Food Programme.

Shriners Hospitals for Children, have locations in Canada, the US and Mexico with the goal of  providing  the highest possible  care to kids with conditions that include burn injuries, neuro musculo-skeletal conditions, and other needs. Shriners Hospitals cultivate  a compassionate and collaborative environment with a focus on familial inclusion in the process.

Shriners Hospitals are also known for providing the continued education for doctors and other healthcare professionals. Shriners Hospitals are also known for their investment in conducting research with the aim of finding solutions and insights to information that enhances the quality of life for both the patients and the families of the patients treated by the hospital.

These hospitals pride themselves on providing services for all patients seeking care regardless of their ability or inability to pay.

Shriners International is headquartered in Florida. The hospitals  are known as “The World’s Greatest Philanthropy”, and cater specifically to children under the age of 18. However, patients needn’t be affiliated with the Shriners in order to receive treatment at one of these facilities.  

FDA Approves Tumor Paint Testing on Kids

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Adrian Rubin

a soft-tissue sarcoma from a dog after consuming Tumor Paint BLZ-100. Fluorescence provided by Tumor Paint: cancerous cells highlighted in red. (Blaze Bioscience Inc.)

Many challenges face our global society today, from food insecurity to inaccessible or unaffordable medical care to inadequate educational opportunities to climate – related disaster. Unfortunately the list continues to an exponential degree, which at times can be disheartening for those looking to make a positive difference in the world. Instead of getting dejected about the overwhelming need in the world, it is up to the individual to double down and focus his or her efforts where they can. And on the bright side, even with so many challenges affecting populations all over the world, there are still many small victories worth celebrating. For those interested in bettering the quality and duration of life for sick kids, this month brought promising news for children and young adults possibly facing brain cancer.

BLZ-100 : Tumor Paint

Officials from the FDA recently approved expanding the patients in a clinical trial of the drug – BLZ-100 by Blaze Bioscience to include those that range in age from infants to young adults.The drug utilizes a dye that comes from the venom of a scorpion and highlights cancerous cells so that surgeons can both identify and remove these deadly brain tumors.Researchers at Fred Hutch, Seattle Children’s and the University of Washington both discovered and developed the molecule BLZ-q00. The molecule is made up of a protein from the venom of the deathstalker scorpion (this is responsible for penetrating the tumor cells) and a dye that illuminates when placed under infrared light. The scorpion venom is currently produced chemically, so no naturally- ocurring venom is involved. Prior to the FDA’s approval of expanding the potential trial patient population, the tests were restricted to adults.

Potential for Revolution

According to principal investigator for the trial, DR. Sarah Leary, “…it does have the potential to be revolutionary.” The use of this drug is a result of trying to solve the storied problem of removing malignant cells, while leaving healthy cells alone when attempting to remove brain tumors.Gateway for Cancer Research funded the phase I clinical trial of BLZ-100 with a grant for $800,000. Phase I focuses on the safety, dosage and records the side effects of the drug in a relatively small number of patients. Testing for safety of the drug has gone smoothly in adults, so the major focus for the researchers involves finding the right dosage and ensuring that the medical team operating on the patients has the right kind of device to get the light where it’s needed.

Next Steps with Testing

It’s estimated that The Seattle Children’s trial will continue to run for two years. And if all goes well, hopefully “Tumor Paint” (as it’s called) will be available more broadly within the next three to five years- according to Heather Franklin, president and chief executive of Blaze Bioscience. Regardless of what results from the trials, the fact that this is even within the realm of possibility is a huge boon for those concerned with the health and welfare of ill children.

Celebrity Buzz and Movie Magic at a Children’s Hospital

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Adrian RubinAs an actor whose body of work spans over three decades, Johnny Depp is known for many things. Depp’s work on the classic horror film “A Nightmare on Elm Street” and his bit on the much loved show, 21 Jump Street would spawn an impressive career that landed Depp leading roles in perennial favorites like Edward Scissorhands, What’s Eating Gilbert Grape and Benny and Joon. Moving performances in these offbeat crowd pleasers would eventually lead Depp to a memorable role in the blockbuster hits from the Pirates of the Caribbean Series. While Depp has established himself over the years as a top notch actor he is most recently making headlines for something else.

Depp is currently busy filming the latest installment of the Pirates of the Caribbean series in Australia, but took some time off of the set in order to meet some ill children at Lady Cliento Children’s Hospital.

Dressed in full Captain Jack Sparrow attire, Johnny Depp made the rounds meeting with children currently staying in the hospital. He talked with the kids and was found happily posing for pictures with the patients. One child’s mom noted that, “It was really beautiful. Everyone kept on trying to move him on, but he kept on coming back” to be with the kids.

Depp’s surprise visit to this children’s hospital is a heartwarming story when you imagining the delight that these unexpecting ill children must have felt. What is equally impressive, however, is Depp’s continued commitment to a number of causes. A quick look into the topic reveals that while Depp’s philanthropic efforts are expansive, his commitment to aiding ill children is clearly established. To all of those who give of their time, energy and resources to aiding others, we must say thank you. And hopefully this sort of high-profile volunteer work will inspire others.

Anna Herr Clise – Children’s Champion of the Pacific Northwest

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Adrian RubinSince 1907, the Seattle Children’s Hospital has served under the mission: to prevent, treat and eliminate pediatric disease. The hospital is known for its capacity to address the specific emotional, physical and developmental necessities of children as they grow from infancy to young adulthood.

The hospital deploys the cooperation of physicians spanning almost 60 subspecialties under the umbrella of pediatrics. Therefore it’s no surprise that the Seattle Children’s Hospital offers a host of services including both inpatient and outpatient services as well as surgical, rehabilitative, behavioral, emergency, and outreach services. While the breadth of services offered is unique unto itself, the hospital provides these services whether or not a family is capable of paying. The unique mission of the Seattle Children’s Hospital originates from the hospital’s founder, Anna Herr Clise.

Born in Wisconsin and re-settled in Seattle with her husband and young infant in 1889, Anna Herr Clise joined the Seattle community under the urging of her husband James’ sister.

Adrian RubinWith a background in real-estate, James Clise became a prominent real-estate mogul in the Seattle area. By 1898, the Clises were doing quite well for themselves financially and the family had grown to include two more children, but in that same year tragedy struck and the youngest Clise, Willis died from an untreatable illness.

When Willis died, the nearest children’s hospital was located in San Francisco; but, the best treatment options for children were in Philadelphia.

Nearly a decade later, Anna and James Clise accompanied their daughter on a trip east to a finishing school in Philadelphia. On this trip, Anna and James met with various contacts at local children’s treatment facilities.

This trip, coupled with reflections on her son’s death inspired Anna to create a facility that treats ill children in Seattle.

Upon returning to Seattle, Anna got right to work, and gathered a group of local society women to  create an association that would fund surgical treatments for children with orthopedic disorders. This association would ensure care regardless of a patient’s religion, race or gender.

The founding members paid an annual membership fee of $10 and an extra $10 to fund the association’s treasury. In considering the city’s poor, these women also decided that children whose families are unable to pay should also receive the care they need and decided that financial support for the hospital needed to come from the local community.

Anna Clise would soon after file articles of incorporation for the Children’s Orthopedic Hospital Association, help raise $50,000 to build a hospital, and enlist the pro-bono services of 12 doctors. From there the hospital blossomed and is still a revered institution for treating children with various maladies to this day.