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Brain Tumor News!


Note: The comments under each article title are the opinion of our president, Al Musella, DPM,
and do not reflect official policy of the Musella Foundation!
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05/22/23 Updated NCCN Guidelines for Brain Tumors        

 The updated guidelines  suggest more testing and get more into the genomic markers.  For Glioblastoma, the big change is that Optune (listed as "Tumor Treating Fields (TTF)") is now included in the preferred regimen for patients with a karnofsky score of 60 or more.  In the last version of the guidelines, it was just one of a few choices.  



05/22/23 New legislation proposed to expedite FDA approval process for life-threatening disease treatments        

This is the Promising Pathway Act that I have been talking about for the past few years! It will soon be reintroduced to Congress. When it is, we must collaborate to exert pressure on Congress to pass it. The exciting update is that we now have Senator Kirsten Gillibrand on board! She is a Democrat representing my home state of New York! Previously, when we attempted to get this bill passed, we struggled to find Democrats who would support it. With bipartisan support now in place, our chances have significantly improved!



05/20/23 GT Medical Technologies Marks a Significant Milestone: The 1,000th Order for GammaTile┬« Therapy        

 GammaTile is an implanted into the resection cavity during a brain tumor surgery. It releases radiation to the tumor bed. They are FDA approved for both newly diagnosed and recurrent brain tumors.  1,000 patients are a huge milestone for a new brain tumor treatment. It means it is getting wide acceptance in the field!



05/20/23 Congress should support a new strategy for approving lifesaving drugs        
Being one of the contributors to this bill, I believe it paves the fastest way to discovering cures for critical diseases. Its nature is disruptive, as it fundamentally reshapes the existing system by incorporating a novel conditional approval pathway for FDA drug approvals, which starts after a phase 2 trial.
 
Any medication administered through this pathway necessitates that patients be enlisted in a virtual trial registry. There, their treatment protocols and outcomes are diligently observed. This real-time registry is accessible to healthcare professionals, equipping them to discern which treatments are effective, what combinations are in use, and to assess preliminary results.
 
Traditional practitioners who rely on the rigorous data from Phase 3 trials may have reservations, but it's worth noting that this model provides similar comprehensive data, albeit in a more dynamic context.
 
The bill's effects might be less favorable for major pharmaceutical corporations, which currently generate substantial profits from treatments that are only marginally effective. As a range of innovative treatments receive approval, competition could intensify based on efficacy and pricing.
 
Consequently, the financial requirements to get a drug approved are anticipated to diminish significantly. This shift will likely make it more enticing to develop drugs targeting rare cancers, such as brain tumors, thereby bringing hope to many patients with these conditions.


05/20/23 Roon: The first patient and caregiver education GBM app        

 This is from our friends at Roon.  They are building an educational  community for brain tumor patients. Looks pretty good. Worth taking a look!



05/18/23 Two Leading Nonprofits Join Forces to Fund Brain Tumor Research        

We are thrilled to share the exciting news of our partnership with StacheStrong to support groundbreaking research on brain tumors! Together, we have contributed $80,000 each, resulting in a total funding of $160,000 for five exceptional brain tumor research projects. This collaboration highlights the importance of working together to achieve remarkable outcomes. In addition to StacheStrong, we are proud to collaborate with esteemed organizations such as Cancer Commons, The DIPG/DMG Collaborative, The DIPG/DMG Research Funding Alliance, The Children's Brain Tumor Network, and the DIPG All-In-Initiative. Collectively, these groups encompass more than 100 brain tumor nonprofits, demonstrating the collective effort towards addressing this critical cause.



05/18/23 5K for brain tumor research (MN May 21, 2023)        
Mark your calendars for our upcoming MN 5k fundraiser taking place on May 21, 2023! This year, we have high hopes of surpassing the remarkable milestone of $1 million in total donations generated through this event. Thanks to the generous support from our this as well as our other events, we have been able to fund five promising brain tumor researchprojects today  - in partnership with StacheStrong! 

To join us in this meaningful endeavor, you can participate either in person or by making a donation through our dedicated website at WalkToEndBrainTumors.org.
 
We are excited to announce three additional 5k events in different locations: Salt Lake City on May 29, 2023, Clark, NJ on June 10, 2023, and Street, MD on September 10, 2023.  Your involvement and support are invaluable as we strive to make a difference in the fight against brain tumors.


05/11/23 The Musella Foundation Celebrates 25 Years of Advancing Brain Tumor Research and Supporting Patients        
Reflecting on 25 Years of Impact: A Personal Journey with Brain Tumors
 
When I reflect on the past 25 years, it's remarkable to think about how my personal experiences with brain tumors led to the creation of The Musella Foundation For Brain Tumor Research and Information, Inc. It all started when my sister-in-law was diagnosed with a Glioblastoma in 1992, followed by my dad's diagnosis in 1999. These events propelled me into action, and I became determined to make a difference in the lives of those affected by these devastating tumors.
 
In the early days, I recognized the need for support and information for brain tumor patients and their families. That's when I took the initiative to start the first online support group dedicated to brain tumors. Little did I know at the time, this small step would snowball into something much greater.
 
Today, as we celebrate our 25th anniversary as a 501(c)(3) nonprofit organization, I am filled with immense pride and gratitude for the incredible journey we have undertaken. The Musella Foundation has grown into a leading force in advancing brain tumor research and providing vital information to patients and caregivers.
 
Our dedication and relentless efforts have led to significant achievements, including funding groundbreaking research projects, empowering patients through comprehensive resources, advocating for improved treatment options, and building a strong community of support. Together, we have made a lasting impact in the lives of brain tumor patients and their families.
 
I invite you to read more about my personal story and the origins of The Musella Foundation at virtualtrials.org/musella.cfm. It is a testament to the passion, resilience, and unwavering commitment of our community.
 
As we look to the future, our commitment remains steadfast. We will continue to drive progress in brain tumor research, provide support and resources to those in need, and advocate for improved treatment options. Our journey is far from over, and with the continued support of our community, we are confident that we can make even greater strides in the years to come.
 
Thank you for being a part of this incredible journey and for your ongoing support.
 
Warm regards,
 
Al Musella, DPM
President, The Musella Foundation For Brain Tumor Research and Information, Inc.


05/10/23 The Minnesota Brain Tumor 5K Announces 14th Annual Fun Walk/Run at Stillwater High School, May 21, 2023        

 This is one of two 5k fundaising events we have this month for Brain Tumor Awareness Month!   This event, May 21,2023, and our event in Salt Lake City, Ut on 5/29/23 both will support brain tumor research with 100% of the funds raised (after the direct cost of the events!)    These events are always fun.  If you can participate in either event, register now!   If you can not participate, you can still support either event with a donation!  Go to  https://walktoendbraintumors.org/ for all of our events!



05/08/23 Join Us for Brain Tumor Awareness Month: Free Webinar Series on Innovative Treatments and Clinical Trials Tonight Monday May 8 at 7PM Eastern!        

Last night's webinar was very informative. We posted the recording to our video library.

Tonigth we have Dr Mark Malkin talking about the Clinical Trials for Brain Tumors that are being done at the Cleveland Clinic!

We host these webinars in our Zoom room, which offers the best platform for interactive participation and asking questions. However, we also attempt to simulcast the sessions on Facebook, as our Zoom room has a capacity limit of 500 attendees, which we've exceeded on a few occasions.

Last night we did not get to most of the questions asked on Facebook.  If you would like to ask questions, join in our zoom room. It is really easy.  Starting about 15 minutes before each event, our virtualtrials.org/webinar  page will have a link to the room. Just click it and you are in!

 
 


05/07/23 Join Us for Brain Tumor Awareness Month: Free Webinar Series on Innovative Treatments and Clinical Trials, starts Tonight!        

 Starts tonight!

This year's Brain Tumor Awareness Month Webinar series promises to be engaging and informative for all attendees. We host these webinars in our Zoom room, which offers the best platform for interactive participation and asking questions. However, we also attempt to simulcast the sessions on Facebook, as our Zoom room has a capacity limit of 500 attendees, which we've exceeded on a few occasions.

 
Please note that last year, Facebook unexpectedly terminated our webinar and deleted the recording. Therefore, we recommend joining our Zoom room at virtualtrials.org/webinar first and using Facebook only as a backup option!


05/04/23 Clinical trial has promising results to fight brain cancer        

This is an interesting development in medical research that warrants attention, as it explores the use of ultrasound to open the blood-brain barrier. It is important to note that this is still very early work, and it remains to be seen if this approach will prove to be effective. The clinical trial is currently open for patients with recurrent glioblastoma at Northwestern University in Illinois, with Dr. Roger Stupp serving as the primary investigator. Dr. Stupp played a pivotal role in developing the standard treatments for glioblastoma, including the Stupp Protocol of radiation and temozolomide followed by temozolomide alone. He also later added Optune to the protocol. With such a track record of working on significant medical breakthroughs, I wish the team success and will continue to monitor their progress closely.



05/03/23 Tumor Treating Fields (TTFields) increase the effectiveness of temozolomide and lomustine in glioblastoma cell lines        

The recent findings on the addition of Lomustine to the standard treatment of Temozolomide and Optune for Glioblastoma patients are particularly intriguing. The study showed that when the MGMT status is methylated, the effect of Temozolomide combined with Lomustine and Optune is additive, resulting in a cumulative effect that is equal to the sum of the individual effects. However, for patients with unmethylated MGMT, the effect is found to be synergistic, which suggests that the combination of these drugs results in a cumulative effect that is greater than the sum of the individual effects. These findings have important implications for the development of more effective treatment strategies for Glioblastoma patients and should be explored further.



05/02/23 Join Us for Brain Tumor Awareness Month: Free Webinar Series on Innovative Treatments and Clinical Trials        

This year's Brain Tumor Awareness Month Webinar series promises to be engaging and informative for all attendees. We host these webinars in our Zoom room, which offers the best platform for interactive participation and asking questions. However, we also attempt to simulcast the sessions on Facebook, as our Zoom room has a capacity limit of 500 attendees, which we've exceeded on a few occasions.
 
Please note that last year, Facebook unexpectedly terminated our webinar and deleted the recording. Therefore, we recommend joining our Zoom room at virtualtrials.org/webinar first and using Facebook only as a backup option!


05/02/23 Join Us for Brain Tumor Awareness Month Webinar Series. Tonight's topic is Pediatric Brain Tumors!        

 We host these webinars in our Zoom room, which offers the best platform for interactive participation and asking questions.  You can ask questions during the event.
 
 


04/29/23 Interstitial photodynamic therapy for newly diagnosed glioblastoma        

 The survival curves for this clinical trial are very good, and this was for people with inoperable tumors which makes it much more impressive.    The concept is they give a dye - 5-Ala - to the patient. The dye gets taken up by tumor cells much more than normal cells.   This dye is FDA approved as Gliolan for use during surgery so the surgeon can tell tumor from non tumor.  However, they found that when the dye is excited by light (or by ultrasound when used with Sonodynamic therapy), it kills the cells that take up the dye and leave the normal cells mostly alone.  They use fiber optics to deliver the light through a small bur hole in the skull.    We do not yet have results for sonodynamic therapy but they have to be compared to this to see which way is better. Sonodynamic therapy is non invasive, and has the advantage of being able to treat  large areas of the brain, wheras photodynamic therapy requires direct access to the area.



04/26/23 Seattle Children's Launches Pioneering Immunotherapy Clinical Trial Targeting Four Antigens at the Same Time to Combat Pediatric Brain and Spinal Cord Tumors        

This is an exciting development in the fight against brain tumors. While previous attempts at using Car-T cells against one target have shown some success, they fell short of the desired outcome. However, the new plan to target four different targets simultaneously holds great promise. In other types of cancers, Car-T cell therapy has led to cures, not just modest improvements in survival as seen in most brain tumor trials. Brain tumors pose a unique challenge due to their heterogeneity; some cells may have that one target, while others might not. This means that targeting only one antigen is not enough, as the remaining cells without the antigen will continue to grow the tumor. By targeting four different antigens, the hope is that all tumor cells will have at least one target, leaving no way for the tumor to grow back. For more information on how Car-T cells work, check out the video in the link below. The Musella Foundation, in collaboration with other pediatric brain tumor organizations, provided a grant to Dr. Vitanza at Seattle Children's to support early work on this project through our "DIPG All-In-Initiative."



04/24/23 The Uncertainty of Clinical Trial Results        
The interpretation of clinical trial results can be a complex and often contentious process. This  article highlights how even randomized phase 3 trials can be interpreted in vastly different ways by experts. In some cases, one expert concludes that a drug works, while another claims it doesn't, and a third says it's impossible to tell.
 
This issue is further complicated by the fact that the statistics used in clinical trials are designed to estimate how results from a limited group of patients, some of whom may not even be using the treatment correctly or at all, will affect a specific patient. As such, these statistics cannot always accurately predict the effectiveness of a treatment for a particular patient.
 
This is why it's crucial to collect more data through initiatives like the Promising Pathway Act. This act aims to gather data on all patients who use a particular treatment, providing a more comprehensive understanding of its effectiveness.
 
The article's findings serve as a reminder of the need for greater transparency and objectivity in the interpretation of clinical trial results. We must strive to ensure that our understanding of these results is based on sound evidence, not on subjective interpretations that can be influenced by personal biases or financial interests.
 
By supporting initiatives like the Promising Pathway Act, we can help ensure that patients receive the most effective treatments possible, based on robust and reliable data.


04/24/23 Gel has 100% success rate in stopping brain tumors in mice        

 Of course it is only in mice so we can't get too excited about this just yet but it is an interesting new way to deliver treatments to tumors.  The two components they used sound logical and if it isn't as effective in people, they can try other combinations using the same delivery system.  



04/21/23 FDA About to Make Drug Approvals More Difficult        
The FDA's proposed rule to make it harder to get a drug approved is concerning, particularly for rare diseases like pediatric brain tumors. While the FDA aims to improve the quality of data used for drug approvals, their solution of requiring blinded placebo-controlled trials is expensive, time-consuming, and can harm patients in the control group. Moreover, running these types of trials for rare diseases may be impossible due to the lack of patients.
 
The cost of drug development is also a major issue, with the current cost of over $5 billion making it unsustainable for rare diseases with fewer patients. If we expense that over the six-year life of exclusivity for a disease like DIPG, which affects about 400 patients per year, the cost per patient is over $2 million just to defray the cost. Add in the cost of making and distributing the drug, advertising, insurance, and profit for shareholders, and the drug has to have a price tag of over $4 million per patient. Now consider that it will probably take a cocktail of 3-5 of these drugs to produce the cure. We are now at over $10-20 million per patient, which is not sustainable.
 
I propose the Promising Pathway Act, which creates a new time-limited conditional approval path for drugs that have shown to be safe and have a biological effect. The level of proof required should be phase 2 data, which would allow for a phase 3 trial to proceed. Patients who want to use drugs approved under this pathway would have to consent to taking the same level of risk as entering a phase 3 trial and participate in a regulatory-grade registry. This registry will gather and structure all medical records of patients using these drugs, providing real-time data on drug efficacy and safety.
 
This system will lower drug development costs, reduce time from first in human to approval, and allow doctors and patients to access a range of new drugs that can compete on effectiveness and price. The cost per patient to develop will be much lower, at around $4,100. This cost is calculated by dividing the total cost of developing the drug by the number of patients that would use the drug during its lifetime. Furthermore, this system will find adverse effects faster than the current system, and all patients will be observed, providing a more comprehensive understanding of drug interactions.
 
In summary, the Promising Pathway Act offers a better solution to the current issue of drug development and FDA approval. It will reduce costs, provide real-time data on drug efficacy and safety, and offer a range of new drugs for patients and doctors to choose from.


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