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Research Update

 

More Than A DNA-Genetics Project

 

By Michael Pasternak

 

I have received numerous emails regarding the recent WebNewspaper article and report about the Foundation’s DNA/Genetics Research Project.  I have also received a continuous flow of questions about the progress of other Foundation research projects. Each April, Dr. Douglas Anderson prepares a report to share with everyone and will do so in 2018. But, because of the large numbers of requests here is a brief update which will create even more questions from you, our wonderful supporters. And yes, the goal of The Facial Pain Research Foundation has been to find cures by the end of 2020 and it still is!  As soon as any of the projects move into human studies we plan on informing everyone.

 

First, the Genetics/DNA Project:  We now have a team of scientists who have worked hard using their unique skills and understandings and have presented a report to our Trustees and asked to go forward to replicate the study during the next year to prove that what they have found are really the genes that will lead us to finding the cures. We have put in print their non-technical report in the WebNewspaper.  We will NOT report ALL that we know until the study is replicated and proves what we know.  Yes, not everything we know is in the non-technical report.  Our scientists have seen far too many research journal articles that prematurely announced findings that could not be replicated.  I assure you that the Foundation is not about to spend $325,000 in the next year to prove that we have found the genes responsible for trigeminal neuralgia if our scientific team didn’t believe we are on the edge of reporting great findings.

 

The money to pay for our Foundation’s research has great character and integrity.  It comes from thousands of Volunteers who have been involved in grass-roots efforts to find the cures.

We are only funding research that is novel and unique, the investigators responsible for each project are among the leading researchers in their respective fields, and there is significant diversification among the projects…and we believe that they will succeed.

 

Second, Researching Stem Cell Replacement Theory:  This is one of the primary research approaches targeted and supported by the FPRF since its inception.  This unique therapeutic approach involves the transplanting cells that produce pain inhibitory neurotransmitter(s) that can suppress the devastating pain of TN.  The chief Investigator of this approach is Allan Basbaum at the University of California San Francisco.  These studies have developed to the extent that they contributed to the formation of several new companies that have developed  the concept of transplantation of cells that produce inhibitory neurotransmitters in animals and are being developed to be used in humans for the management of different neurological conditions that appear to arise from loss of inhibition with an emphasis on trigeminal neuralgia.  Elizabeth Cilker-Smith and I have been invited to visit with the 34 scientists working at Neurona, Inc in San Francisco in a few weeks to discuss their progress and we will also meet with Dr. Basbaum and the scientific team at CODA to get further progress reports. Frankly, I’m expecting excellent progress.

 

Third, Investigating Peripheral Nerve Myelin:  “They are working on making myelin.”  They are also trying to develop the necessary processes that would assist people in strengthening and repairing the damaged myelin. An intact myelin sheath is necessary for the proper functioning of the nervous system. Dr. Lucia Notterpek and her team’s overall goal is to define specific protein-lipid interactions, with a focus on PMP22, and cholesterol in the establishment and maintenance of lipid membrane domains in the peripheral myelin.  In the absence of PMP22, myelin is prone to compression-induced damage leading to localized myelin injury.  For completing the aims of the project they are using cultured cells and nerves from normal and PMP22-deficient mice and engineered molecular constructs.  It is exciting to visit Dr. Notterpek’s lab and view the activity in the microscopes.  This is hard basic research.

 

Fourth, Mapping Toward A Cure: Dr. John Neubert, the Lead Investigator at the McKnight Brain Institute and is team has been very active in recruiting volunteers to have their brains scanned to investigate the cause of TN in both animals and humans. Knowing where the pain in the brain is occurring and exploring the compounds and other substances that can block the

pain pathways to the brain signature centers will be a great achievement.  We need over 50 volunteers to prove scientifically the imaging aspects and the project is well past the 50 percent mark.  More volunteers are scheduled for the next few weeks and we will make another announcement for additional Volunteers in mid-March.  While the imaging of humans continues there is also animal imaging and substance testing in the laboratory.  The goal is to complete the imaging before the end of 2018.

 

Fifth, Delivering Compounds That Can Eliminate The Pain:  or a Dr. Wolfgang Liedtke calls it
“Not Science Fiction”

In a “nutshell” what we have is a most unusual way to deliver substances (cells) at the base of the brain that stops neuropathic pain from entering the brainstem.!! 

 

Dr. Liedtke has submitted his most recent report to the Foundation and has made a request for continuing the research that would lead to stopping the pain.  We are unable to share his findings with the public right now…but it has great merit.  Sometimes research is unique and proprietary.  State tuned!

 

Sixth, Gene Therapy to target pain:  The Facial Pain Research Foundation’s newest

research project launched in the Fall of 2017 with the goal to be completed in 2-21/2 years.

Dr. Todd Golde and his research team (google Todd Golde!) have added new professionals to the lab and launched to project to find the cures. 

 

Please feel free to call me regarding our research progress.

Thank you for your great support and interest in our research.

 

Michael Pasternak, Ph.D., Founding Trustee

This email address is being protected from spambots. You need JavaScript enabled to view it.

352-377-1437

 

 

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THANK YOU PAT AND AMY TOMASULO

AND CHICAGO

 

 

LAUGH YOUR FACE OFF RAISED OVER $700,000!!!

 NEXT LAUGH YOUR FACE OFF MAY 5, 2018

 BY MICHAEL PASTERNAK

 

When Pat and Amy started Laugh Your Face Off to raise funds for research to find the cures for trigeminal neuralgia and related neuropathic pain they never knew how successful they would be in both raising funds and bringing hope to thousands of people suffering from the most painful condition known to humankind.  All six of the research projects funded by the FPRF have benefitted greatly from their wonderful efforts.  On behalf of the Research Foundations Trustees, Volunteers, and those in pain Thank you Pat and Amy Tomasulo.

 They have raised over $600,000 in Chicago and they are just beginning.  This year the show will double in size, and Amy Tomasulo and their team of Volunteers are planning the best Laugh Your Face Off ever!   Because of the huge turn-out in past years to see outstanding nationally known comedians, they are moving to a new Chicago location able to seat twice as large an audience.  Last year tickets for LYFO sold out in five days!!  On May 5, 2018 the LYFO will be held at the Park West, Located in scenic Lincoln Park, a few blocks from Lake Michigan, and just minutes from downtown Chicago. Park West is surrounded by numerous hotels, exciting night life, retail stores, and a fabulous park with Chicago's Lincoln Park Zoo. Ticket information will be available after the New Year. May is a beautiful month in Chicago!  Pat and Amy hope that TN patients, their families, and friends can enjoy LYFO and Chicago! Hoping for a huge TN family and friends gathering!

After three years of hosting Laugh Your Face Off many people in the Chicago area know that WGN-TV Sports Anchor Pat Tomasulo's wife Amy has the rare TN pain disorder.  Beyond the comedy events Pat and Amy attend the Foundations Trustee Meetings and Scientific Meetings. Amy has written Newsletters for Foundation and both have assisted others in raising funds for the research.

Those who wish to join the list of LYFO sponsors please contact This email address is being protected from spambots. You need JavaScript enabled to view it.  

 

 

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Michael Pasternak To Serve On

 

The Interagency Pain Research

 

Coordinating Committee

 

Michael Pasternak, Ph.D., a Founding Trustee of The Facial Pain Research Foundation (FPRF) has received an invitation from the Secretary of Health and Human Services, Sylvia M. Burwell to serve on the Interagency Pain Research Coordinating Committee (IPRCC) of the National Institutes of Health for a term beginning immediately and ending July 31, 2018.

 

The Committee coordinates with the Department of Health and Human Services and Federal agencies all activities that relate to pain research and reports to the Secretary of Health and Human Services. Management and support Services within the National Institutes of Health is provided by the Office of the Director, National Institute of Neurological Disorders and Stroke (NINDS).

 

The duties of the IPRCC include: develop a summary of advances in pain research supported or conducted by the Federal agencies relevant to the diagnosis, prevention, and treatment of pain and diseases and disorders associated with pain; identify critical gaps in basic and clinical research on the symptoms and causes of pain; make recommendations to ensure that the activities of the NIH and other Federal agencies are free of unnecessary duplication of effort; make recommendations on how best to disseminate information on pain care; and make recommendations on how to expand partnerships between public entities and private entities to expand collaborative, cross-cutting research.

 

Michael believes the this IPRCC appointment puts the Facial Pain Research Foundation in an important relationship with those involved in pain research in Washington DC. “I am looking forward to working with the IPRCC and the opportunity to continue the quest to find a cure for trigeminal neuralgia and neuropathic pain. We are making great strides with our research and hopefully 2016 will bring us closer to our goals.”

 

 

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Indepth TV Interview

 

Canada AM

 

Michael Pasternak Reports On Progress

 

 

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Finding a cure for trigeminal neuralgia and related neuropathic pain, the most painful disorders known to humans, is the mission of The Facial Pain Research Foundation. To conquer the problem by the end of 2020 The Foundation formed an international consortium of eminent scientists to conduct studies aimed at translation from laboratory to patient. July 2013 marks the end of the Foundation’s second fiscal year and provides the opportunity to review its research progress. Following are the four Foundation related/supported research projects making progress toward ending the pain. Each takes a different path and approach to finding a cure. The Foundation’s Scientists believe that a number of different kinds of cures will be necessary to end TN and neuropathic pain. They understand that there might be multiple causes at work in different patients.

University of Florida Neuroscientist Dr. Lucia Notterpek is using nanoparticles the size of viruses to deliver new drugs to cells that fail to do their normal job of producing myelin, a waxy coating on the nerves. Neurosurgeons have observed myelin damage in many patients with classical trigeminal neuralgia. Her studies are aimed at restoring formation of the protective coating in an effort to prevent the excruciating pain of trigeminal neuralgia. Notterpek is carrying out her studies of nanoparticle drug delivery in dish cultures of both normal Schwann cells, which produce myelin, and in abnormal Schwann cells which do not make myelin. The selected new drug agents are designed to affect the molecular pathways believed to be important to myelin formation and to induce production of the coating. She hopes to find ways to correct injurious changes in myelin-producing cells, which occur long before painful symptoms of nerve damage.

At the University of California San Francisco, Dr. Allan Basbaum’s studies are aimed at solving a known cause of facial pain: the apparent loss of chemical mediators that normally inhibit the transmission of pain signals to the brain. He has been transplanting nerve cells that secrete these inhibitory chemicals into the trigeminal area of hyperactivity. The goals are to introduce these healthy cells into the areas of the brain influenced by nerve damage, and to have them fully accepted as an integral part of normal nerve circuitry where they will be expected to normalize the inhibition of pain signals traveling to the brain. Basbaum’s work to stop nerve pain in animals has made international news. As a result of increased funding his laboratory team has grown and his research results are making excellent advances. The Foundation is very hopeful that his discoveries will eventually stop nerve pain in humans.

Dr. Andrew Ahn is working at the McKnight Brain Institute of the University of Florida to advance the scientific understanding of the mysteriously erratic pain of trigeminal neuralgia and other nerve-related problems. Ahn is seeking clues through an intensive study of throbbing pain experienced in people who have trigeminal neuralgia and other nerve-oriented pain conditions such as anesthesia dolorosa. In his laboratory they are trying to take the descriptions of symptoms by patients and turn them into more objective brain events. He wants to identify brain changes associated with the experience of pain, including throbbing, which is his current focus of attention. This is the first in a continuum of research designed to identify new sites (areas of the brain) for targeting treatments to end the pain. This will hopefully lead to more diagnostic understanding but also to the ability to effectively image the pain pathways of the brain which could lead to the possibility of creating processes that will block those pain pathways. Thereby, creating a way to end the neuropathic pain.

The fourth and newest Foundation research project is entitled “In Search of a Cure...Finding the Genes That Predispose to Trigeminal Neuralgia”. It’s goal is to identify the genes that make people susceptible to TN or cause the pain and then move forward toward prevention and cure. The team of international scientists is led by Principal Investigator pain research pioneer Dr. Marshall Devor of the Hebrew University of Jerusalem, Israel. Two other scientists are also Principal Investigators: Dr. Kim Burchiel is the Chairman of Neurological Surgery at the Oregon Health & Science University (OHSU) in Portland, Oregon and Dr. Ze’ev Seltzer is a Professor of Genetics at The University of Toronto. Dr. Joanna Zakrzewska of London England, The Foundation’s International Research Coordinator and Dr. Scott Diehl, Director of the Center for Pharmacogenomics and Complex Disease Research at the University of Medicine and Dentistry of New Jersey are the research project’s consultants.

The research project requires the study of 500 TN patients (research subjects). 100 subjects will have their DNA collected at OHSU. The remaining 400 subjects will be identified from eight additional locations. After the collection of the DNA it will be genotyped at a laboratory in New Jersey. The collection (phenotyping) of DNA from TN patients has begun at OHSU and the first 100 subjects will hopefully be completed by Fall. Following the collection of DNA and the genotyping process, the analysis of the findings will be the focus of the research team. Hopefully finding the causal genes and leading to prevention and cure. 

 

For additional information and/or questions please contact the Foundation at This email address is being protected from spambots. You need JavaScript enabled to view it. or Michael Pasternak at This email address is being protected from spambots. You need JavaScript enabled to view it. 

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MICHAEL PASTERNAK REPORTS ON THE FIRST 133 DAYS

When I think of the enormous surge of activity during the first 133 days generated by the Foundation and its Trustees I have to smile.

No doubt, the recruitment of volunteers to our cause has been substantial and essential...Pam Unverzart, our story writer, fundraising host, and log-in record keeper...Joann Alam sending out our thank you letters and keeping track of donors...Elizabeth Cilker-Smith our West Coast Coordinator, who has just completed a video interview of our UCSF researcher Allan Basbaum...and our

Florida Coordinator Karen Burris...and our Facebook consultant Bart Nigro...and...and...and...the list goes on!

Our Friends who have told their pain stories have been invaluable in explaining our goal of finding a cure. Of course, our amazing researchers have helped! Our donors...who have given their time and talent and money.

Who would have guessed we would have help from Leonard Finz, our mystery writer and Grammy winner Producer-Songwriter Brent Maher?

And today the distinguished New York Times Journalist Mervyn Rothstein writes for our webnewspaper.

Patient Tiffany Smith has agreed to allow us to use her pictures on fundraising collection materials and devices. Videos of Kay and Bob Keilhofer and their experiences have been amazing.

Americans have a tradition of helping others and it truly has been our experience as we have started up The Facial Pain Research Foundation. 

No doubt we will have more fundraising excitement in the next 133 days...We will focus that time on creating new materials necessary to influence donations and outreach activities related to their use....such as brochures and videos for different types of meetings and events. They will explain who we are...why we are important...and how people can help.

We will also use the next 133 days to plan fall and winter fundraising events in all areas of the country.

This week my wife Sherrilyn and I are going off on a great vacation to celebrate 35 years of marriage. This pause in my Foundation activities creates a good time to take a look at what we all have accomplished since our first Board of Trustees meeting on January 8, 2011...and what we will focus on in the next 133 days.

Thanks a billion to everyone who has helped us to grow. We are unique...special...and committed to finding a cure!

 

 

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There's Room for More ... Volunteers

By Michael Pasternak

 

It is amazing the number of people asking us at the Foundation “how can WE help you?”

As our Facial Pain Research Foundation grows into its first six months of activity here are a few of the most recent Volunteer activities to share with you...  

Some of our doggie agility friends have been talking with us about raising money for research through some agility “fun runs”...sounds great to me! Having fun and money too!

Polly Potter from Arkansas has put together a booklet for our Foundation entitled “Conducting A Successful Race Event” and has offered to help us stage a run to raise money! Looks like others will follow.

Six Time Grammy award winning Nashville Writer/Producer Brent Maher and his daughter Dianna are planning fund-raising benefits and people will soon be able to download music off of our Foundation webnewspaper site. Music will be available for purchase with the monies going to our research.

As a result of the Paragon Connection book sales we are getting requests from other authors who wish to help us...Thank you Leonard Finz and Roundtree Mysteries!

Jim Pasternak has heard from Academy Award winner Martin Landau that he would like to do a Public Service Announcement to help the Foundation bring in more donations.

Jim is also contacting television production casts to identify others willing to speak out to fund research to “end the pain”. The PSA will be made by professionals volunteering in the LA studio.

When one begins to add up the number of Foundation Volunteers, it appears that we have attracted quite a crowd.

We have Volunteer Pain Story Tellers, Volunteers Tom and Susie and their great Challenge Grant, Volunteer Story Writers, Volunteer Outreach Coordinators, Volunteer Facebook Consultants, Volunteer “Thank You!” Messengers, Volunteer Contributors, Volunteer Webnewspaper Staff, and Volunteer Pain Patients spreading the word about our efforts.  

So, please join our Volunteer Crowd .. rumor has it "There Is Room For More."

Give Michael Pasternak a call at 352-377-1437 or email This email address is being protected from spambots. You need JavaScript enabled to view it.

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I’m Getting Questions

 

 

Now that our Foundation Webnewspaper is up and running I’m beginning to receive questions from you. I realize that no matter how much we try to explain who we are, what we are about and our purposes and goals, questions still exist. It is important that we try to answer the questions as we seek to influence you to get involved and help us. So lets take a look at two of your questions:

 

Why didn’t you do this five years ago? This question is being asked in several different ways. Like, “If it wasn’t a good idea five years ago, why is it now?” Or, “You are very very bad people for having taken so long to have finally created the Foundation that you should have developed way back then!” Or, “I have been suffering with these unsuccessful medications and surgeries you told us about and now you are admitting that they don’t work and we need to find a cure!”

 

Look, there are no excuses. I wish we would have created this Foundation years ago when I was the President of TNA-The Face Pain Association. I believe all of us wish we would have had more “great ideas” back then. Certainly TNA has helped thousands of people with a multitude of programs. Supporting research has always been a purpose of the Association but for whatever reasons the leadership and resources necessary to find a cure did not materialize. We now have the people who will focus on finding a cure in the next ten years and I believe we now have the passion and leadership necessary to be successful.

 

What motivated you to provide the leadership necessary to create the Research Foundation...to move it from an “idea” to reality?

 

Two “things” happened. Both telephone calls. The first seeking help from my wife Sherrilyn’s aunt who had a root canal procedure go wrong. Terrible constant pain from nerve damage. The second, one of our nephews (in his mid 40’s) experiencing “lightening like pain” in his left eye that could not be diagnosed by the opthamologists.

These calls were very upsetting to me. I was thinking “that after all these years helping to create programs designed to educate and support patients in pain and we still don’t have a cure...it’s time to find a cure”. I shared my thoughts first with my friend Mike Hirsch (also a former TNA President) and he said let’s pull together the very best group of dedicated people to accomplish the task of creating The Foundation. And we did.

 

This column is written on a regular basis. Please feel free to contact me at This email address is being protected from spambots. You need JavaScript enabled to view it.

 

 

 

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