We had scheduling trouble so recorded the webinar off line and posted it to our website. We set up a place in our discussion forum (there is a link right above the video) to ask questions and the speaker will reply!  This is an important webinar and you should consider GammaTile when you are going to have a brain tumor surgery for a brain met or a primary malignant brain tumor or a meningioma. See the webinar for details!

 This is the life story of Dr Linda Liau!  She is one of my all time favorite brain tumor doctors - and am proud to say - a friend!   She is also on the Musella Foundation medical advisory board and has helped mold the foundation into what it is today!

 Promising results from patients with unmethylated Glioblastoma who only had a biopsy or partial resection. 

 This article talks about a very large increased risk of developing meningiomas when taking Cyproterone acetate which is used to treat severe acne and excessive hair growth in women and prostate cancer in men.  If you take this drug talk to your doctor about a possible screening MRI.

 We posted 2 new videos about DCVax on our website. The first one talks about the history of DCVAX and talks about the manufacturing process.  Very interesting. The second video explains the clinical trial design and results. They are at virtualtrials.org/dcvax

 All of these projects have the potential to make a big difference and all are worthwhile.   We are working on funding 2 more projects in the next few weeks - the projects have been approved by our grants committee and are just waiting for us to raise the money to fund them.  Donations are badly needed and will be used for these projects immediately. To make a donation, go to virtualtrials.org/donate

 This is very scary - about 7% of the time when a parent is told their child has a DIPG (from reading an MRI)  the doctor is wrong.  These tumors are rare - so most neuro-radiologists do not see enough of them to be experts in it.  This is why you need a second opinion on the reading of the MRI.  All DIPG and DMG patients should join the DIPG registry. In the USA it is at https://dipg.org/dipg-research/dipgdmg-registry/ and internationally at https://dipgregistry.org/  Both will have experts review your MRI for free and let you have a free consultation with experts. The Musella Foundation helped fund a small part of these registries and consultation programs via our participation in the DIPG Collaborative. We also offer similar services to Glioblastoma patients with our registry at https://virtualtrials.org/xcelsior.cfm

 Excellent review of all of the oncolytic viruses being used to treat Glioblastoma.  Of note is the Japan has given conditional time limited approval of one of them: teserpaturev, which is a small trial showed 92% 1 year survival for recurrent Glioblastoma which is unheard of!   Can't believe Japan implements conditional approvals and the USA doesn't yet!

 This study shows that it is ok to use Optune when you have a shunt!  

 The concept is to try to make currently available immunotherapy drugs work better by changing the tumor microenvironment to enable the immunotherapies to work better.   This article is about good results in head and neck cancer, but they approached us about funding research into using this drug for recurrent high grade gliomas and we were so impressed that we quickly awarded them a $100,000 grant to get the clinical trial going!  As a matter of fact, one of our medical advisory board members who reviewed the grant application liked it so much, he volunteered to participate in the trial!

  This is the Promising Pathway Act that I have been talking about.   If you do not know what it is, watch my webinar from last week to understand the implications. It will speed up the search for the cure and get us new treatments in time to help people who have brain tumors now.    EVERYONE who reads this should send a letter of support to their representatives in Congress and get at least 10 of your friends and family to do so. I made an easy way to do so:  go to  https://virtualtrials.org/activism.cfm#/1/ and fill out the form and send it. Should take 2 minutes!  There is a chance that the bill comes up for a vote in 2-3 weeks, so the letters need to be sent right now. 

 Sorry about that. Turns out the Sundays in May are pretty busy - with Mothers' day and the Memorial Day  holiday weekend!   We will record those two postponed webinars and post them to the video library/   Perhaps next year we will try a different day of the week!

 It is early but very impressive results. Will keep an eye on this!

 The Brain Tumor Charity's thoughts on the DCVAX results.  You can see the results at virtualtriasl.org/dcvax

 This combination makes a lot of sense. A checkpoint inhibitor by itself has not been shown to help Glioblastomas.   They enhance immune reactions, but they require something to trigger that immune reaction.  Optune could provide that trigger, as it kills cells, the immune system is triggered and the Keytruda should be able to  enhance that immune response. A small pilot study showed good results. 

 As if we did not have enough problems.   Luckily - (or unluckily) - brain tumors are a high priority and I haven't heard of this impacting our community yet. let me know if you have problems!

 Sorry about that - last minute scheduling problem popped up.  Will reschedule when possible!

 I have the utmost respect for the people at the FDA - I have worked with them a lot, and find they are very knowledgeable and want to help us get to the cure quickly. However, they are shackled down with laws that were not designed to handle our needs. We will probably never have a magic bullet that cures brain tumors.  The cure is going to be a cocktail approach made up of drugs that by themselves can not get FDA approval - so under the current system we will not get the cure. This bill will enable the FDA to approve these drugs and still oversee who they work out. It has to get approved. Go to virtualtrials.org and click on Advocacy alert to send letters to your congressmen!

 We added another fundraiser in NJ this time!   These walks play a big part in our ability to fund brain tumor research!

Very impressive results for GammaTile. For recurrent Glioblastoma patients with methylated MGMT, overall survival reached 37 months. For Unmethylated, survival was 20 months, which is still very impressive!

GammaTile are implantable tiles that release radiation to the tumor bed. They are FDA approved.  Since they are relatively new, they are not yet available at all hospitals, so if you are going to have a brain tumor surgery, ask your doctor if GammaTile is appropriate for your case. If he says no, check the https://gammatile.com/findatreatmentcenter/ website to see if your center has experience with GammaTile.  If not, get a second opinion from one of the centers listed.