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The Miracle of Volunteerism

 


 

 

 

by Michael Pasternak


 

The success of The Facial Pain Research Foundation is a testament to the Miracle of Volunteerism.

 

 Over 98% of the monies raised go directly to the research programs. We have no paid employees and minimal overhead costs.   Our volunteers work daily distributing public service announcements, sending thank you letters, writing WebNewpaper stories, overseeing Facebook and Twitter, writing and sending out the FPRF Mini-Newsletter, answering scores of email and telephone calls, interacting with the scientific community, and a myriad of other tasks that keep the Foundation running. 

 

 Volunteers are also responsible for raising millions of dollars in an amazing variety of ways. They have organized walks and races, musical and golf benefits, comedy nights, dance performances, book, jewelry, art, and clothing sales, wine tastings, zumbathons, raffles, auctions, distributed jars and other collection devices.

 

 And, of course, there are those volunteers who simply ask others to donate money in order to help the Foundation reach its goals.  We have received everything from a one dollar donation to hundreds of thousands in grants and gifts. Volunteers also work endlessly to raise awareness of trigeminal neuralgia and related neuropathic pain and encourage more volunteers to help find a cure. 

 

I would like to highlight the contributions of one individual who embodies the spirit of the Miracle of Volunteerism.  Her name is Karla Gudgeon and she is from the UK.  Among a variety of other fundraising activities she designs and makes beautiful greeting cards  and donates the proceeds to The Foundation.  If you would like to know more about Karla you can go to past editions of the WebNewspaper.  She continues to amaze us with her fundraising and personal stories of commitment to our search for a cure.  I recently asked Karla to share with us some of her journey.  I know you will appreciate the following inspiring story: 

 

Beauty Beats the Beast

Hi everyone. Some of you may already know me. For those who don't I am Karla, nicknamed Athena, a 24 year old (well nearly!) trigeminal neuropathy sufferer from England. I got trigeminal neuropathy, which is the same symptoms as trigeminal neuralgia but caused by trauma or nerve damage, six years ago after an operation on my jaw went wrong. I have both TN and ATN symptoms which means I have pain 24/7 but with sharper 'lightning' attacks at intervals. I also have severe hemorrhaging from my jaw and a collagen disorder called Ehlers Danlos Type 3. Sometimes it feels like my life is a catalogue of hospital appointments, medication (that never works on me and always causes worse side effects!) and TN attacks. Many of you will know how this feels, and it is easy to get depressed and let it take over. I have moments like this too especially as my condition has now led to me going unconscious 10-20 times a day, often with no warning. This had led to the loss of my driving license and is preventing me from returning to university to get my masters and PhD. 

 

But there is hope 

I don't just mean the long term hope that the FPRF will find a cure, although that does keep me going sometimes. I mean a short term hope of enjoying life as much as possible despite the pain. I always try to arrange nice things in the midst of all the appointments. Sometimes I worry about missing out and having to cancel last minute but at least I have tried. This gives me something to aim for and a reason to keep going in my worst times. Recently I've been almost a party animal in fact despite the fact I can't drink alcohol due to my morphine. Trust me don't try it! On 21st June I attended my university's graduation ball - although I graduated last year (A struggle and massive boost in itself) many of my friends graduated a year later. Part of me wished I had been able to return to complete my masters but the bigger part of me just enjoyed going to the ball as a friend's 'plus one' and supporting all those friends who had achieved their degrees this year. I am so glad I did. The ball was at Blackpool Tower Ballroom, a Lancashire landmark that will be lighting up teal for TN on 7th October this year. I got to wear the most beautiful dress I had ever seen and felt like a fairytale princess for the night. Unfortunately a TN attack struck halfway through the night and I found a quiet alcove to wait it out before inevitably going unconsciousonly to wake up to find my friends had moved the party to me. In fact the first thing I heard as I woke up was a friend yelling at her boyfriend 'Keep that wine away from Karla's dress!' My friends insisted on sitting in that alcove with me for over half an hour chatting and laughing and generally having a great time, despite my 'short decisive unintended naps' as I refer to them. In fact there were several Sleeping Beauty jokes going around and I now have a picture of me in a beautiful dress, unconscious and unintentionally doing my best impression of the fairy tale! 

The TN attack eventually passed and the rest of the night went brilliantly. I got home and my jaw bled about 20 minutes after getting the ballgown off - thank goodness it waited! Yes I paid for the night the day afterwards (and maybe a few days after that if I'm being truthful) but I wouldn't have swapped the experience for the world - TN most definitely lost that night.  

I had my birthday party the week afterwards and again my friends rallied around, catching me when I passed out, holding me up as I danced so I didn't need my crutches and generally supporting me (in more ways than one!) I have always coped with my condition by making a joke of it and see no reason to change. It may not work for everyone but it works for me. Am I guilty of putting a show on in public? Yes sometimes I admit I am. But now many friends have seen me at my worst, screaming in pain or spouting blood everywhere and they have stuck by me. So in a way this illness has shown me who my true friends are. And I can't thank them enough for it!  

To stick with the fairytale theme one of my TN friends took a look at the photos from Graduation Ball and captioned them 'Beauty beats the Beast.' I'm not sure about the beauty part but the beast definitely lost!


 

Mini Newsletter June 2015

 

 

By Amy Tomasulo

 

 

I am very excited to once again bring you the latest from the Facial Pain Research Foundation. This month, we have exciting information to share regarding one of our research projects. I was so inspired by the latest update, that it became the final push I needed to participate myself.  The research project I am referring to is:

  

Finding the Genes that Predispose to Trigeminal Neuralgia

  

After my last newsletter, I asked Michael Pasternak for specific information about the science behind some of our research projects- the science we are waiting on for a cure. Admittedly, much of it is way beyond my understanding, but there a few things I’ve learned that I think I can intelligently explain to all of you.

 

 The genetics study, broken down very simply, suggests that if a room full of people each had a vascular compression on the trigeminal nerve, not all of them will experience pain. As a matter of fact, only 1 or 2 will experience the pain of trigeminal neuralgia. Similarly, in a room full of people without compression, 1 or 2 may still experience TN pain. WHY? The scientists leading this study believe it’s because some people are genetically predisposed to TN pain. (You can hear from them directly later in this newsletter, as I’ve included their research project synopsis).

 

And here is how we can help them- the scientists need our DNA. Neat, right? Something we can do to help the actual science! We raise funds, volunteer, spread awareness- ALL of which are unbelievably important.  But now we essentially get to work alongside the scientists (albeit for only about ten minutes). It’s FREE, it’s quick, it’s easy, and with 9 collection centers internationally, there’s a good chance you live near one. If you do, it’s imperative that you participate, because they currently don’t have enough samples to complete their research.

 

I wanted to share my experience donating, in case you’re still not sure if you have the time (which I thought a few times), or if you’re still apprehensive. I live in Chicago, and luckily the University of Illinois at Chicago is one of the collection centers. Dr. Konstantin Slavin (an acclaimed neurosurgeon, and friend of the FPRF) and his office are spearheading things here. Naturally, I wasn’t sure what to expect out of my visit.  Would this take hours? Would it hurt? Was I going to have to fill out a mountain of paperwork? The answers were no, no and no.

 

Upon arrival, I was greeted by Christy (Dr. Slavin's nurse practitioner), and we spoke about my experience with TN, as she wanted to learn as much as possible about the disease- a trait that far too few of us encounter in people. She then escorted me to a room where Fil, the research coordinator, was waiting. Fil calmly explained what was going to happen, got my consent, and we were off! There is no cheek swab, as I imagined there would be (too much Law and Order). Rather, all I had to do was fill a small container with saliva.

 

THAT’S IT.

 

If you’re suffering a bout of dry mouth, like I was that day, maybe it’s a little more challenging, but it’s THAT EASY. As I (slowly) filled up my container, Fil asked me a series of 22 easy questions. The questions are designed to determine if the participant has ever been diagnosed with classical Trigeminal Neuralgia, or TN1. By Question #22, I’d hit my quota. Total elapsed time- 10 minutes! Ten short minutes to be a small part of a major study in finding a cure!

 

I was the 40th TN patient to donate in Chicago, and that got me thinking.... “I'm only number 40?” The initial goal of collecting 50 samples at each collection site was set in March 2014,yet here we are over a year later, and some of the collection sites haven’t come close to that number. Here are the sample totals at each of the 9 collection sites, as of June.

 

 

Site

Samples

OHSU

141

UCSD

25

UPenn

39

UCSF

25

U Toronto

50

U London

25

U Illinois

42

U Florida

40

NYU

23

Total

410

 

 OK, so Oregon is killing it, but only one other collection site (Toronto) has met the goal of 50 samples. And the urgency to donate is even greater, as ALL of the facilities have now been authorized to collect 100 samples each. That leaves at least 8 of the sites in need of volunteers, volunteers like the TN patients reading this newsletter. If you live near any of these facilities, please donate. Trust me, it’s incredibly easy. 

 

 I promised you a synopsis from the scientists, themselves, and hopefully it explains the project a little better than I did. Dr. Marshall Devor and Dr. Kim Burchiel authored the update below. But please read on afterwards for a fundraising update.

 

Latest Update on Genetics Study: 

 

Number of Genetic Sequencing to be increased from 500 to 1000

 

 The goal of this research is to identify the genes that predispose individuals to develop trigeminal neuralgia. Converging lines of evidence now strongly suggest that no physical characteristic, such as neurovascular compression (NVC), can explain all cases of Type 1 Trigeminal Neuralgia (TN1). We believe that individuals with TN1 must have a set of genes that put them at risk for the development of TN, with or without NVC. Our investigative group is now convinced that given a statistically relevant sample of patients with TN1, we will be able to identify these genes.

 

We now have nine centers, including two international centers, actively acquiring DNA samples in patients with TN1. Currently, we project that we will have in hand 500 patient samples by mid-summer 2015, our original goal. At this time we have approximately 400 samples collected.  We believe that with a modest increase in our budget, we could double that number to 1000, and finish that sample acquisition by spring 2016. This sample size increase would substantially increase the power of our study, and would strengthen the reliability of our conclusions.

 

Looking ahead, this team of investigators has put forward a strong case for doubling the number of saliva samples collected from 500 to 1000. They point out that such an increase in sample size would substantially enhance the power of this study in addition to strengthening the reliability of any conclusions drawn. They project that collection of an additional 500 samples could be completed by Spring 2016.  200 are presently at the Rutgers Genetics Lab for processing.  It should be noted that should the additional 500 samples not be needed to complete the present study, they would be available for the “next step” in this research journey to cure TN pain without a loss in momentum.  

 

 Those people interested in donating their DNA please email their requests to This e-mail address is being protected from spambots. You need JavaScript enabled to view it .  Collection is happening at Oregon Health and Science University, University of California, San Francisco, University of Florida, University of Toronto, University of Illinois, Chicago, University of Pennsylvania, New York University, University of California, San Diego, London UK (Joanna Zakrzewska)

 

Now let's talk about fundraising. I'm excited about this first effort, as it will not only raise money for FPRF, but also provide a little comfort for TN patients, and help to educate those unfamiliar with the disease.

 

Trigeminal Neuralgia Exposed: "Our Story" is a book about TN, written by TN sufferers. Led by author (and TN sufferer) June Toland, "Our Story" contains quotes and shared experiences from 54 TN sufferers, family members and caregivers from around the world. It is especially invaluable to new sufferers. If you purchase the book pre-sale, it's only $12.99. And the best part? ALL profits go to FPRF. For more information, or to purchase the book, go to www.tnexposedourstory.net, or you can find June Toland in the Facebook group TNExposedOurStory.

 

We're also only a few weeks away from 2 really great fundraising events.  Let's Face It: An Event to Help Cure Trigeminal Neuralgia is July 18th at the Liberty Vineyards and Winery in Sheridan, NY. I told you about this last month, but just a refresher- 20 bucks for a big feast of a dinner, entertainment and wine for purchase! They're also going to have a pretty outstanding prize auction. For information, or tickets, visit www.letsfaceitwny.org, or www.libertywinery.com/upcoming events/. You can also call the vineyard directly at 716-672-4520.

 

And The 4th Annual Race to Save Face! is coming up quickly on July 10th. Runners, walkers, and supporters are invited to Dover, Ohio for a 5-mile race, a 2-mile walk or a 1-mile fun run for participants 12 years of age and under. If running isn't your thing, the beautiful School House Winery will have food and wine available for purchase. There will be entertainment by REN, a silent auction, raffle prizes, and swag for those participating in race events. For more information, such as race times, prize information, locations to buy raffle tickets, and updates on the event, you can visit their Facebook page. Simply search RACE TO SAVE FACE.

 

And now for some updates on recent fundraisers . . .

 

TN warrior and military wife Angela Strenad raised $700 from selling TN-related T-shirts and sweatshirts. She designed the shirts herself, and sold them online using a Booster campaign. Congratulations Angela!

 

On April 30th in Grafton, MA, Leah Allen and Hannah Babb hosted a ballet performance in honor of Hannah's dance instructor, TN warrior Jen Agbay. "Peter and the Wolf" raised $1,210 for the FPRF, and rumor has it, there will be another performance fundraiser next year.

 

Frank Skoviera, our Communications Director here at the Foundation, has raised $2,000 through his employer, IBM. The IBM On Demand Community program allows IBMer’s an opportunity to receive grant money from IBM to support their volunteer work at non-profit charities. Frank has raised money for the FPRF for the past two years by taking advantage of this generous program. Frank also has a Team of IBM volunteers spread across nine countries working to raise awareness of TN and neuropathic facial pain.

 

Next month, I'd like to talk more about fundraising- specifically, about on-going internet fundraisers, ideas for fundraising and much more. Remember, if you are planning a fundraiser, please contact us- we want to help you spread the word!

 

We will also hear from Toni Saunders (TNnMe founder) about her latest project- asking the World Health Organization (WHO) to add Trigeminal Neuralgia to their "Health Topic List." This is so important for spreading awareness, and we can help her make it happen!

 

As always, feel free to contact me at This e-mail address is being protected from spambots. You need JavaScript enabled to view it .

 

Until next time, here's to a pain-free future!

 

Amy Tomasulo

 

 

 

 

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One Hour of Research Costs $125.00

Success in answering critical questions about the role of genes in TN and other

nerve-related facial pains relies on private support. Here are ways in which donors

at all levels can join The Facial Pain Research Foundation in finding a solution:

  • Support full expenses of one patient      in the study:     $1,770
  • Pay for the genotyping of one research      participant:    1,100
  • Help with the phenotyping costs for      one participant:     600
  • DNA extraction from one person’s      saliva samples           40
  • Pay for saliva kit & shipping cost      for one participant      30
 

 

Three Time Emmy Award Winner

Tony Shalhoub Public Service Announcement

With

Brooke Adams and Diane Baker

  

 

 

 


 
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