Adrian Rubin

Adrian Rubin: Help the Children’s Hospital Association Today!

If you are a parent, you’ve no doubt thought about what you would do if your child got seriously ill. Your number one priority, of course, would be getting the best care possible.  Your second concern would probably be how you are going to pay all of the resulting bills. Children’s hospitals can help.

Children need special care when they are sick, from providers who have years of experience working with kids. Children need medications, monitoring, technology, and procedures that are specialized for their needs, and they need hospital staff members that are sensitive to both kids and their caregivers. Children’s hospitals around the country can provide this specialized care, very often for children that are uninsured or under-insured.

But children’s hospitals do even more than care for children when they are sick. They also work in the community to educate the public about child abuse prevention, injury prevention, and how to keep kids healthy. They provide training for pediatric residents and specialists, and support research into disease prevention.

There are 220 children’s hospitals around the country that belong to the Children’s Hospital Association (CHA). The CHA works to make children’s hospitals better, by focusing on policy, educating providers, helping payers, encouraging quality and safety best practices, and raising awareness of health care needs for children, as well as the significance of children’s hospitals and the work they do. The Association serves as a unified voice for children’s hospitals, ensuring that each hospital can give the very best of care to each and every patient.

The CHA is a very worthy cause, and there are many ways to support the group. You can donate money, volunteer your time, organize fundraisers, or even just visit your local children’s hospital to read to the kids and bring them toys.

Adrian Rubin Blog

If you are a parent, you’ve no doubt thought about what you would do if your child got seriously ill. Your number one priority, of course, would be getting the best care possible.  Your second concern would probably be how you are going to pay all of the resulting bills. Children’s hospitals can help.

Children need special care when they are sick, from providers who have years of experience working with kids. Children need medications, monitoring, technology, and procedures that are specialized for their needs, and they need hospital staff members that are sensitive to both kids and their caregivers. Children’s hospitals around the country can provide this specialized care, very often for children that are uninsured or under-insured.

But children’s hospitals do even more than care for children when they are sick. They also work in the community to educate the public about child abuse prevention, injury prevention, and how to keep kids healthy. They provide training for pediatric residents and specialists, and support research into disease prevention.

There are 220 children’s hospitals around the country that belong to the Children’s Hospital Association (CHA). The CHA works to make children’s hospitals better, by focusing on policy, educating providers, helping payers, encouraging quality and safety best practices, and raising awareness of health care needs for children, as well as the significance of children’s hospitals and the work they do. The Association serves as a unified voice for children’s hospitals, ensuring that each hospital can give the very best of care to each and every patient.

The CHA is a very worthy cause, and there are many ways to support the group. You can donate money, volunteer your time, organize fundraisers, or even just visit your local children’s hospital to read to the kids and bring them toys.

Don’t Forget September = Childhood Cancer Awareness

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

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.

New Discovery in P53: new cancer treatments to follow?

Adrian RubinA recent discovery by scientists at St. Jude’s Children’s Research Hospital may change the way we attempt to kill cancerous tumor cells. This new revelation revolves around the infamous tumor suppressor protein, p53.

This suppressor protein is known as the “Guardian of the Genome” and is so critical to cancer research and treatment because the job of this protein is to prevent tumors from forming in the first place. P53 takes these preventive measures by inciting damaged or borderline cells to stop dividing or even die. In most cases of cancer, the protein or the pathway in charge of p53 does not function properly or at all. In the absence of a functioning p53 protein, the cells in this tumor are able to grow and divide.

The protein P53 functions within the nucleus of the cell, although earlier research suggested that it also works outside of the nucleus in order to trigger cell death.

The exciting new research into how p53 actually works reveals how they actually are able to trigger cell death. Scientists now understand that p53 works in the cytoplasm in order to trigger death of those tumors  using apoptosis. The data gathered from this research also exposes how, in the near future, molecules could potentially be used to trigger this same process that ultimately destroys cancer cells and acts as a viable treatment option and strategy for those afflicted with cancer.

Through understanding how p53 targets and attacks these cancerous cells, the scientists hope to eventually replicate this process for people with nonfunctioning p53 proteins.

According to Douglas Green, Ph.D and chair of the St. Jude Department of Immunology – as well as a co-author of this study, “The p53 protein is almost universally regarded as working in the nucleus and was thought to have no function in other parts of the cell,” he claimed.  “Our study provides the first biophysical insights into how p53 can have another function, one with important consequences for cancer.”
While this is still new information and has yet to be synthesized into an actionable treatment strategies, this discovery has the very real potential of being the basis for a complete change in how the medical community approaches treating the disease.

CAI – Empowering Families Against Asthma

child with orange inhalerCurrently, approximately one in twelve people is afflicted with asthma living in the US. That means that about 8 percent of the population suffers from this condition, and the numbers are steadily increasing with each passing year. According to the most recent data available from the CDC, 9.3% of children in the US have asthma, or about 6.8million.

In December of 1997, the Children’s Health Fund  (founded in 1987) launched the Childhood Asthma Initiative. The goal of CAI is to provide families with information to help manage childhood asthma – particularly in underserved segments of the population.  Currently the Childhood Asthma Initiative publishes a family guide on managing asthma in children.

What is Asthma?

Asthma is a chronic respiratory condition that can cause extreme difficulty in breathing. When the sufferer has an asthma attack, the bronchi in the lungs are essentially spasming causing the airways to be constricted. Once the airways are too narrow, the asthmatic will then undergo an asthma attack.

Asthma symptoms are different for everyone. However, the most common symptoms include: wheezing, chest tightness, shortness of breath,coughing and fatigue.

Asthma is known to strike people of all ages, and is especially common to start during childhood. Unfortunately, asthma doesn’t have a cure, only treatment and management options. However, there are certain triggers to be aware of that can help predict asthma attacks.

Another variation in asthma is the level of degree to which the patient is afflicted with this respiratory condition. Sufferers can have anything from an intermittent, to a mild persistent, to a moderate persistent to a severe persistent level of affliction. This basically reflects how severe your personal case of asthma is. Although this gradation reflects how often an asthmatic has symptoms or how severe they are, it’s important to keep in mind that anyone with asthma, regardless of the category is subject to getting very sick from an attack. This means that being prepared for a potential attack (ie knowing what to do, and having your medicine on hand) is important for all sufferers of asthma.

What are Common Triggers for Asthma Attacks?

Again, while these specific triggers can vary by person, there are certain things that have a propensity for inciting asthma attacks. Some of these culprits that live inside include; mold, dust and dust mites, cockroaches, housepets, rats and mice. This is just one more reason to keep your home clean! Things like pollen, change of seasons, plants, grass, flowers and trees can also set off a trigger outdoors for people with asthma. Cigarette smoke, strong smells and air pollution can also have a negative effect on someone with asthma.
In addition to these sorts of triggers, things like stress, cold air, illness, exercise and food allergies may incite an asthma attack. Knowing this, it’s important to keep in mind that managing stress levels and taking care of yourself is of the utmost importance if you suffer from asthma. It also means that indoors, it’s important to keep the house as clean, pest and odor-free as possible. Dusting and cleaning often (when the person with asthma isn’t around) is key. This also means it’s important for people with asthma to get tested for allergies so they know what their bodies don’t act to favorably.

JLaw surprises patients at shriners canada


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.  

First Successful Bi-Lateral Hand Transplant Surgery on Child

Adrian RubinExciting news has emerged from the Children’s Hospital of Philadelphia in Pennsylvania. Recently surgeons from the Children’s Hospital of Philadelphia teamed up with colleagues from Penn Medicine in the hopes of achieving the world’s first successful bilateral hand transplant on a child. This medical team performed the task of transplanting both donor hands and forearms onto eight year old Zion Harvey.

The surgical team was led by Dr. Scott Levin, MD, FACS who is also the Chairman of the Department of Orthopaedic Surgery at Penn Medicine and the Director of the Hand Transplantation Program at The Children’s Hospital of Philadeliphia. Dr. Levin is also a professor of surgery  at the Perelman School of Medicine at Penn. The operation required a team of 40 professionals who spanned a wide cross-section of specialties and disciplines. The operation itself lasted for 10 hours.

According to Dr. Scott Levin, “This surgery was the result of years of training, followed by months of planning and preparation by a remarkable team..” and that “The success of Penn’s first bilateral hand transplant on an adult, performed in 2011, gave us a foundation to adapt the intricate techniques and coordinated plans required to perform this type of complex procedure on a child. CHOP is one of the few places in the world that offer the capabilities necessary to push the limits of medicine to give a child a drastically improved quality of life.”

The young patient Zion Harvey, who suffered from a serious infection as a young child that required the amputation of his hands feet and a kidney, was initially referred to Shriners Hospitals for Children owing to their well-earned reputation for expert pediatric orthopaedic care. From that referral, the team at Shriners orchestrated a strategic alliance with CHOP and their team. The collaboration between these established institutions required a lot of logistical coordination, but in the end it meant that the people assembled to perform the task were a veritable dream team of professionals, each executing their individual tasks and more team oriented roles with precision and expertise.

Prior to the operation, they needed to identify an appropriate donor through the Gift of Life Donor Program. Subsequent to locating the donor, the patient had to undergo numerous evaluations and medical screenings owing to the complexity of a double-hand transplant. The medical team needed to ensure that Zion was the right candidate for the surgery.

After this lengthy process, the operation was eventually set to commence. During the actual procedure, the donor forearms and hands were connected to the patient through bone, nerves, skin, tendons and muscles. The team was divided into four sub groups to allow for simultaneous operating teams. The operation was successful and Zion is currently working on rigorous physical therapy for his hands in order to improve the function of his new hands.

Teens Get A Room of Their Own at Children’s Medical Center of Dallas

Although children’s hospitals can at times seem like a place of great sadness, owing to the gravity of the illnesses that these young people often face, they can also be pillars of great triumphs. This past June, the Children’s Medical Center in Dallas Texas opened a room dedicated explicitly to teen patients staying at the  hospital. The idea for this teen room, officially known as “Carson’s Corner” came about after Annette Leslie reflected on her own son Carson’s experience in the hospital after receiving a diagnosis at 14 of medulloblastoma. This particular type of cancer targets the brain, and Carson passed away from this illness at the age of 17.

 

adrian rubinAnnette recalled how lonely some of those days could be for her son when he was undergoing treatments, and she liked the idea of creating a space for ill teenagers that would provide a retreat for them where they could socialize with each other, relax and just have some fun. Although the hospital, like many already has a playroom for smaller children, this space is specifically for the 13 plus crowd. The space is equipped with supplies for all kinds of fun activities including art supplies, TVs, an Xbox, books and magazines. There’s even a “doodle book” – almost like a guest log, that allows the teens to leave positive messages for each other, or leave drawings of their own in there. This cover of this book reveals pictures of Carson.

 

 

In addition to providing these young patients with a myriad of activities, Carson’s Corner is also furnished with cozy couches. Both Carson’s Mom and child life team leader, Melinda Goff knew that all of these touches were critical in establishing the room as a unique space clearly differentiated from the rest of the hospital. Goff also claimed, “It was really important to us that it wasn’t a space that felt like it was just for one purpose”.

 

Those most concerned with the design of the space knew the importance of curating an environment that welcomes a vast array of interests and can be easily converted to accommodate the needs of those occupying the space. Funding for Carson’s Corner comes from the Carson Leslie Foundation, which also funds trips four times each year for teens battling cancer.

 

Annette Leslie was inspired to create a foundation to provide this room and these trips based on a request made by her son towards the very end of his brief life. After confiding in his mother that he had thought he was going to make it, Carson said,

 

“ Mom, don’t let them bury me. Make sure they study those tumors in my brain because if those tumors could help some kid someday not die from cancer like I am, I’d like that – it’s hard to have cancer.”

 

Adrian Rubin

With that in mind, Leslie created the Carson Leslie Foundation with the intention of funding research on pediatric research and to encourage teens grappling with the illness. Currently the Carson Leslie Foundation is helping to fund projects at UT Southwestern Medical Center, Texas Tech University HEalth Science Center and Baylor College of Medicine in Houston. This is all in addition to the funding the space at Children’s Medical Center of Dallas. Carson Leslie’s giving nature will continue on even after his death through the people who knew him, the admirable causes funded by the Carson Leslie Foundation and those positively impacted by his legacy.

 

FDA Approves Tumor Paint Testing on Kids

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.