Note: This is a very long web page. This is the editorial section of the TGA Project 2019 website. The articles, comments, and items herein are personal opinions of the posted author. If you would like to submit an article, comment or item please go to our contact page to email your submission.
TGA Project's Beginning
By Richard Holl 12/22/17
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This article was written with the assistance of 18 TGA Volunteers.
Just what is this 'TGA' diagnosis that so few know about? Odds are good that many readers of this article have not heard of this rare neurological condition, much less know someone who has experienced it. Even the National Alliance on Mental Illness (NAMI) does not list Transient Global Amnesia (TGA) on its “Mental Health Conditions” page (see “Home” page, under “Learn More” tab).
The Mayo Clinic gives the following TGA definition: transient global amnesia is a sudden, temporary episode of memory loss that can’t be attributed to a more common neurological condition, such as epilepsy or stroke. During an episode of transient global amnesia, your recall of recent events simply vanishes, so you can’t remember where you are or how you got there. In addition, you may not remember anything about what’s happening in the here and now. Consequently, you may keep repeating the same questions because you don’t remember the answers you’ve just been given. You may also draw a blank when asked to remember things that happened a day, a month, or even a year ago.”
The criteria for diagnosis of TGA consists of:
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Sudden onset of memory loss, verified by a witness
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Retention of personal identity despite memory loss
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Normal cognition, such as the ability to recognize and name familiar objects and to follow simple directions
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Absence of signs indicating damage to a particular area of the brain, such as limb paralysis, involuntary movement, or impaired word recognition
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Duration of no more than 24 hours and generally shorter
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Gradual return of memory
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No evidence of seizures during the period of amnesia
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No history of active epilepsy
Transient global amnesia was first identified by MB Bender in 1956. A case study by Hodges and Warlow in 1990 noted that over one thousand TGA cases had been reported, yet its etiology remained unknown. Even now, almost two decades later, TGA is the mysterious diagnosis given when testing rules out all other possible causes for short-term amnestic events. Patients are told by their clinicians not to worry about this benign condition because it rarely, if ever, reoccurs. However, dramatic loss of memory for hours…with no explanation of why…leaves sufferers with anxiety nonetheless.
When patients seek answers for their amnesia online, many find their way to two Facebook groups created by those who have experienced it: “Transient Global Amnesia (TGA)” and “I know what transient global amnesia means…and saw one during acute stage”. It is a great comfort to meet others who have received the same diagnosis. Now they have an understanding audience to hear their TGA stories; commonalities are sought among members’ stories, anxieties are sympathetically eased and helpful advice is shared from members’ own experiences. There are approximately 585 members of the combined two TGA Facebook groups.
This past September, the need was seen for a compendium of TGA facts to be created for newcomers to the groups. Volunteers were sought and 146 Facebook members from around the world submitted their names to participate in the design of an online “TGA Clubhouse” where members can visit and find rooms permanently 'furnished' with TGA information, personal testimonies, articles, FAQs, terms, surveys, polls, and even humorous cartoons. Recently a world map (see Figure 1) for weekly updates was added of members’ and guests’ locations, both in the U.S. and around the world. A current World Map of these TGA Volunteers can be found at https://tgaproject2017.wixsite.com/tga2018 This collaborative effort became the TGA Project 2017-2018.
Our TGA Roll Call of 146 as of December 20, 2017: US 94, UK 25, Australia 9, Canada 5, France 2, New Zealand 2, Mexico 2 and these countries 1 each: Belgium, Iceland, Indonesia, Netherlands, South Africa, Sweden, and Turkey.
Compared with support groups for well-known and widespread diseases/conditions like cancer and diabetes, our TGA patient numbers are admittedly minuscule. However, we are just as fervent in our search to make sense of our diagnosis and maybe more so, since very little is known about our condition, even by the providers we have seen. While not life threatening, TGA can be life changing, as I and others can unfortunately testify. Many of us live with the anxiety of “waiting for the other shoe to drop”. Indeed, despite assurances otherwise, a significant number of our members have had more than one sudden amnestic event, sometime months apart, sometime years apart. We want to make sense of our unsettling TGA diagnosis, so we can live our lives without fear of another large block of time being lost. “Should I drive again?” wonders one member, whose TGA struck while she was driving, causing her to crash her car. “Should I babysit my grandchildren again?” wonders another member, who had hours of memory loss while home alone with her precious little ones. These are the lifestyle questions that haunt TGA sufferers, because there is a chance that transient global amnesia will reoccur plus the daily new quirks we deal with.
Our medical providers, after checking us out thoroughly and finding no cause for our transient global amnesia, smilingly tell us that no harm has been done: we will feel back to normal in a day or two, our memories will return, and we will almost assuredly never have another spell in our lifetime. Over and done with! Our families are relieved and we certainly wish to be, but as time goes on we realize that physical and mental changes remain. For instance, it has been over four years since my TGA, but I still experience continuing short-term memory issues, mild cognitive impairment, anxiety, depression, odd little quirks, sleep problems, and concerns about developing Parkinson’s and/or Alzheimer’s. Members of the TGA Facebook groups echo and validate my feelings by posting testimonies of strikingly similar residual “fallout” from their TGAs. Members also report migraines, a strong sense of unease, malaise, inability to multitask as before, being easily overstimulated in crowds or busy situations, sensitivity to strong sunlight or halogen lights at night, panic attacks, mental fogginess (quirks), and memory issues for months to years afterwards.
There seems to be a variety of triggers for TGA: strong physical exertion, immersion in cold water, extreme stress, the Valsalva maneuver, migraines, and sexual intercourse/coital headache, to name a few. But what perplexes us is why would these triggers cause a TGA for us when people all over the world have experienced the same exertion/stress/etc. on any random day…when we ourselves have experienced them before…but no sudden amnesia event was the result? Why after age 50 (another commonality) have we been struck? Should I avoid all those possible triggers? What if none of those triggers applied in my case, so I don’t know what to avoid? Members of the TGA Facebook groups continually search for answers in their posts: has anyone else in your family had a TGA? (possible genetic cause?) Has anyone else just started on such-and-such drug right before your TGA? (possible drug reaction?) I remember being dehydrated and thirsty right before my TGA…anyone else? (lifestyle cause?) We are trying to find answers…we have SO many questions!
Because most folks do not have “Transient Global Amnesia” written in their medical charts, the few of us with that dubious distinction receive little notice from researchers and none from big pharmaceutical companies. What is there to research when all testing (MRI, EKG, EEG, CT scan, blood work, etc.) shows normal results and when we can’t even remember what we experienced? Why bother to design a drug for a medical event that has no etiology and, anyway, happens only ‘once in a lifetime’? Without having major support from the medical community, we TGA sufferers must draw strength from each other, and so we continue to welcome more and more new members to “the club no one wants to belong to”.
That’s why our team of Volunteers is donating their time and talents to build the TGA Clubhouse. We collaborate on design and content, support new patients, search new postings for helpful information or testimonies to include, follow some obscure research, write and edit new articles, etc. Volunteers are from all over the map and thus can be available virtually around the clock. There are no dues or fees, no fundraising or corporate sponsorship for the TGA Project. We hope to continue to gather more statistics, more evidence, and more reasons why this rare and unique neurological condition continues to strike so few in each new generation. Our Clubhouse is always open and full of advice and information for new TGA patients and their families. We are currently applying to attend select national mental health conferences in 2018 as exhibitors. We have no idea if that will happen, how we would pay to attend, how we will get there, and what we would be expected to display. At the moment, we just have our own personal knowledge, our sense of humor (Fig. 2), and our mission to help the next generation of TGA patients.
Thank you for taking time to read our story. We are looking for a medical provider (or two) in the fields of Neurology and/or Psychiatry with an interest in Transient Global Amnesia. If you would be willing to recognize our TGA Project 2017-2018 and offer support of any kind, we would be very grateful. Please visit us at: https://tgaproject2017.wixsite.com/tga2018 or tgaproject2018@gmail.com
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Internet page of the National Alliance on Mental Illness (NAMI). 12/20/17 retrieved from:
https://www.nami.org/Learn-More/Mental-Health-Conditions
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Internet page of the Mayo Clinic. 12/20/17 retrieved from:
https://www.mayoclinic.org/diseases-conditions/transient-global-amnesia/symptoms-causes/syc-20378531
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Bender, M.B. Syndrome of isolated episode of confusion with amnesia. Hillside Hospital. 1956;5:212–215.
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Hodges, J.R. and Warlow, C.P. Syndromes of transient amnesia: towards a classification: a study of 153 cases. Journal of Neurology Neurosurgery and Psychiatry. 1990; 53: 834–843
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Facebook TGA Group Transient Global Amnesia retrieved from:
https://www.facebook.com/groups/332192076978375/?ref=bookmarks
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Facebook TGA Group I Know what Transient Global Amnesia Means retrieved from:
https://www.facebook.com/groups/30324806135/
The Differences Between TGA,
TEA, and TIA***
by Richard Holl 1/3/18
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This article was put together to put the above three medical events into one easy to read document.
TGA = Transient Global Amnesia
TEA = Transient Epileptic Amnesia
TIA = Transient Ischemic Attack or mini-stroke
Medical definitions are located in our Medical Glossary Section. All three of these events need to be diagnosed by your medical team. Our information is intended to assist you when you return home from an medical appointment to further increase your understanding of your particular condition and/or terminology used by your medical team.
Two medical articles were referenced in the writing of this TGA Tymes January Featured Story. Dr. Spiegel's article published this past October 24, 2017 titled "Transient Global Amnesia: Current Perspectives" is an excellent article to read to increase your TGA/TEA/TIA knowledge. Dr. Arena's article written in 2015 is also very informative and has a more involved chart with MRI and EEG brain scan medical terminology. Many other interesting articles are referenced in our Library's Reference Files Section.
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The next paragraph is in yellow font and is placed twice in this article due to its importance. Always seek proper medical attention as the Internet is an awesome tool but is not a substitute for medical care provided by your primary doctor, Emergency Room Physician, or your medical team of specialists.
***As always - seek medical attention and medical advice from your medical team, call 911, or go to closest Emergency Room at your local hospital. Our articles are only to supplement your medical information and help to understand terminology provided by your medical team.***
At the writing of this article, these two medical articles were very beneficial:
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A very current article published this past October is located at this link: https://www.dovepress.com/transient-global-amnesia-current-perspectives-peer-reviewed-fulltext-article-NDT
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The following Chart of Differences Between TGA, TEA, & TIA was designed for this article with Information retrieved from Dr. Julieta Arena. Mayo Clinic Proceedings. Feb 2015, Vol 90, Issue 2, Pages 264-272, Table 2.
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http://www.mayoclinicproceedings.org/article/S0025-6196(14)01077-5/fulltext
Transient Epileptic Amnesia
TEA
Transient Ischemic Attack
(Common Name:
Mini-Stroke)
TIA
Often upon waking
or no trigger
No Common
Triggers
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Less than 60
Minutes
Minutes up to
Permanent
Impairment
None,
Oral Automatisms,
Olfactory or Gustatory
Hallucinations
Many
Possibilities
Low
High
Yes
No
Typical Duration
Neurologic Symptoms
Recurrence
Response to
Anticonvulsants
4 to 24 hours
None
Low
No
TGA
Transient Global Amnesia
Common Triggers
Emotional Stress,
Immersion in hot or cold water,
Sexual Intercourse,
Valsalva Maneuver,
or Intense Pain
Information retrieved from Dr. Julieta Arena. Mayo Clinic Proceedings.
Feb 2015, Vol 90, Issue 2, Pages 264-272, Table 2. (see link below)
http://www.mayoclinicproceedings.org/article/S0025-6196(14)01077-5/fulltext
TEA = Transient Epileptic Amnesia = A person experiencing a TEA episode has very little short-term memory, so that there is profound difficulty remembering events in the past few minutes (anterograde amnesia), or of events in the hours prior to the onset of the attack, and even memories of important events in recent years may not be accessible during the amnestic event (retrograde amnesia). Some people report short-lived retrograde amnesia so deep that they do not recognize their home or family members, though personal identity is preserved. The amnestic attack has a sudden onset. Three-fourths of cases are reported upon awakening. In attacks that begin when an individual is fully alert, olfactory hallucinations or a "strange taste" or nausea have been reported. Somewhat less than half the cases include olfactory or gustatory hallucinations, and slightly more than a third involve motor automatisms. A quarter of attacks involve a brief period of unresponsiveness. Frequently, however, there is no warning. During the attack the person's cognitive functions are not generally impaired; perception, communication, attention are normal for most of the duration of the event. In half the cases reported, behavior includes repetitive questioning to attempt to orient experience as the brain fails to lay down new memories or recall a range of recent experiences.
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TGA = Transient Global Amnesia = a neurological disorder whose key defining characteristic is a temporary but almost total disruption of short-term memory. TGA has been a well-described phenomenon for more than 40 years. Clinically, it manifests with a paroxysmal, transient loss of memory function. Immediate recall ability is preserved, as is remote memory; however, patients experience striking loss of memory for recent events and an impaired ability to retain new information. In some cases, the degree of retrograde memory loss is mild. Many patients are anxious or agitated and may repeatedly ask questions concerning transpiring events. Upon mental status examination, language function is preserved, which indicates a preservation of semantic and syntax memory. Attention is spared, visual-spatial skills are intact, and social skills are retained. Symptoms typically last less than 24 hours. As the syndrome resolves, the amnesia improves, but the patient may be left with a distinct lapse of recollection for events during the attack. Generally, TGA is a solitary event, however, patients can experience more than one event with very similar symptoms and recovery.
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TIA = Transient Ischemic Attack = is like a stroke, producing similar symptoms, but usually lasting only a few minutes and causing no permanent damage. Often called a mini-stroke, a transient ischemic attack may be a warning. About 1 in 3 people who have a transient ischemic attack will eventually have a stroke, with about half occurring within a year after the transient ischemic attack. A transient ischemic attack can serve as both a warning and an opportunity — a warning of an impending stroke and an opportunity to take steps to prevent it. Transient ischemic attacks usually last a few minutes. Most signs and symptoms disappear within an hour. The signs and symptoms of a TIA resemble those found early in a stroke and may include sudden onset of:
· Numbness or paralysis in your face, arm or leg, typically on one side of
your body
· Slurred or garbled speech or difficulty understanding others
· Blindness in one or both eyes or double vision
· Dizziness or loss of balance or coordination
· Sudden, severe headache with no known cause
You may have more than one TIA, and the recurrent signs and symptoms may be similar or different depending on which area of the brain is involved.
These terms were researched in WebMD.com, Wikipedia.com, & MerckManuals.com
***As always - seek medical attention and medical advice from your medical team, call 911, or go to closest Emergency Room at your local hospital. Our articles are only to supplement your medical information and help to understand terminology provided by your medical team.***
Rare Disease Day
at the National
March 6, 2018
Rare Disease Day at National Institutes for Health (NIH),
Bethesda, MD
by Richard Holl
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We were located at the Mauser Auditorium on the NIH campus. This exhibit was approved as a no cost exhibit. The exhibit was created using Google images. The theme was puzzle pieces and lost items. The exhibit was manned by myself and my wife. We stayed nearby at our son and daughter-in law’s to save on hotel costs. Meals and travel expenses were ours. Nothing charged to TGA Project2018 as we remain a grassroots volunteer community with a zero budget.
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The following list are some possible future collaborations as we continue to reach out for guidance and knowledge as we enter the health and rare disease communities. We have begun communications with several of this organizations this week upon returning home. We will update as items become more concrete in nature. The list is not in any order. Contact names and info not included at this time to save space.
US National Library of Medicine, Medical Subject Headings, www.nih.gov
Organization for Rare Diseases India www.ordindia.org
National Organization for Rare Disorders www.rarediseases.org
The next exhibit we are considering is April 20, 2018 in LA for the 2018 Brain Fair by the American Academy of Neurology. We have been approved for a complimentary 10 by 10 booth. There are some logistical items to work out, so we may not be able to attend.
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After that the next event we have been invited to is the World Orphan Drug Congress USA 2018 Expo in Washington, DC April 25-27. This may not include our exhibit as those details are being worked out. This is not a free event. I have found out that a single 3 day conference ticket is $3500.00. We may attend as their guests to network and attend workshops without displaying our exhibit.
A major research institution has contacted us by email regarding a future research project on TGA. There may be significant news about this in the future. If this can be arranged, we will need to set-up a sign-up list as communication will be imperative and HIPPA confidentiality secured.
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Upcoming Article
by
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Upcoming Article
by
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Rare Disease Day
at the National
Institute of Health,
Washington, DC
February 2018
by Richard Holl
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TGA Project 2018 will be attending this one day event March 1, 2018. We have been approved for an exhibit and a poster display at no charge to our organization. Because of this exciting news, we will be sending out: materials to edit, ideas to submit, and details if you want to attend with us.
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An email with questions about the exhibit space/layout was sent to the event staff, so we can create a worthy display without spending any of our budget. Also in the email were a couple questions about the poster as the entry form states it is a 4 by 8 foot bulletin board (which is a big poster).
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First thoughts for the poster display centers on puzzle pieces of our Medical Glossary Terms. First thoughts for the table exhibit is our world map as a back drop to floating in the air puzzle pieces with our key criteria and after effects as puzzle piece labels.
Details we have to date and their links:
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https://www.rarediseaseday.org/videos
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Jointly sponsored by the National Center for Advancing Translational Sciences and Clinical Center at the National Institutes of Health (NIH), Rare Disease Day at NIH aims to raise awareness about rare diseases, the people they affect and NIH research collaborations to advance new treatments.
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Rare Disease Day at NIH will take place from 8:30 a.m. to 4:00 p.m. in Masur Auditorium in Building 10 on the main NIH campus in Bethesda, Maryland. The event will feature presentations, posters, exhibits, an art show and tours of the NIH Clinical Center.
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Admission is free, and the event is open to the public, including patients, patient advocates, health care providers, researchers, industry representatives and government employees. In association with Global Genes®, participants are encouraged to wear their favorite pair of jeans. Be sure to follow the event on social media using #RDDNIH.
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How TGA Affects the Family
by Richard Holl
Feb 2018
The lingering two questions that follow a TGA event are will it happen again and how did it affect my family? To the first question, we can report statistics from medical articles with varying rates of reoccurrence at 3% to 20% in a five year period. However the second question does not seem to garner much attention.
“Regardless of the causes behind TGA it is widely felt to be a benign condition requiring no further treatment. The mainstay is reassurance to the patient and family. Naturally patient concerns centre around ruling out tumors and strokes. Family members are often very distressed and perturbed upon witnessing their loved one go from “normal” to being unable to remember anything so acutely.” (Mandiratta, M. Transient global amnesia. Neurology. GM Journal. July 2012; 27-29.)
To put some comparison by numbers, in 2015 there were 42.4 million strokes and 6.3 million stroke related deaths (Wikipedia). TGA has an incidence rate of 2.9-10/100,000 or 100 in a million with zero deaths reported. Therefore the possibility of having a stroke is a whole lot higher and of much worse consequences. The family member witnessing the TGA event has little choice but to fear a stroke is happening to their loved one. The ambulance crew will always treat as if a stroke to follow protocol and establish an IV, hook–up a heart monitor, and probably a nasal oxygen mask. When arriving at the hospital the family will be prepared that it is a stroke until tests are run, exams are given, blood is drawn, and further tests ordered (CT, MRI).
An interesting side note for this article is the medical research regarding TGA events in more than one family member called Familial Transient Global Amnesia. Very few articles or research papers have been written on this topic. Two are provided here to give the reader further reading if interested: 1. Davies and 2. Dupuis.
In a college essay by Amee Baird, she notes, “It is important to provide psychological support to the individual and their family members during a TGA attack as it can be highly distressing to witness a previously competent person suddenly lose their ability to remember something that was said only a minute ago. Harrison 2007.”
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So the search for more information for family members continues as there is very little out there for our families other than "it most likely won't happen again" and we should be glad "it wasn't a stroke." Now I agree I was glad it wasn't a stroke. That death was not imminent. Yet the TGA event did change my life in a deeper way than I could visualize when it happened.
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Is it going to happen again?
Is my memory decline increasing?
Will I start getting lost when driving?
Will I forget my loved ones forever?
Will I not be able to babysit my grandkids?
Am I going to be on Px meds forever?
Will I end up in a locked nursing home?
Am I over reacting?
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I continue to see changes in myself, and I catch conversations my family has when they think I don't hear. Nothing too scary but I know they are worried and don't want to further worry me. They just give dad room, extra time, repeat what they tell me, and laugh with me.
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I hope you are learning to deal with these issues too. Or maybe your TGA event wasn't so drastic. Either way we need to help and support those new to our club.
From my own personal TGA event and hospital stay are several interesting family stories they love to bring up to remind me how sick I was those three days. My wife reminds me of how she knew something was wrong when I kept asking her, “Whose shoes are these?” and “Whose car is she driving?” when she was taking me home. When she pulled into the fire station parking lot, I hopped out of the car, ran over to the ambulance, climbed into the passenger side up front, and told the driver, “We were going up to mile marker 42 to pick up an unresponsive male.” The unresponsive male was me. I had drifted back to 1974 when I was an EMT for the local emergency squad. My wife who in 1974 was my girl friend told me to get in the back and listen and follow their directions. Later at the hospital my four adult children and two daughter’s in law were told to wear the same color shirts each day so I could remember them as I came out of the “fog.” My brother in law loves to tell the story he thought I was faking it, until he heard me repeat the same questions over and over and over for almost 48 hours. Now almost five years later, I utilize text messages every hour or so up update my family of my location and well being. My memory has been retested and my short term is rapidly decreasing. It took me almost two hours just to type this article due to my looking back to read what I just wrote to stay on track.
Baird, A. TGA Essay. ARC Centre for Excellence in Cognition & its Disorders. June 25, 2014.
http://brainfoundation.org.au/wp-content/uploads/2015/05/Baird-Amee-Transient-Global-Amnesia1.pdf
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Davis, R. Familial TGA. Case Reports in Neurology. Sept 2012 4(3): 236-239 retrieved from:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3531927/
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Dupuis, M. Familial TGA: Report of ten families. Journal of the Neurological Sciences. Oct 2017. Vol 381.pg 381 retrieved from:
http://www.jns-journal.com/article/S0022-510X(17)33790-5/fulltext
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Harrison, M. The diagnosis and management of TGA in the Emergency Dept. Emergency Medical Journal. Jun 2007 24(6): 444-445 retrieved from:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2658295/
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Hodges, J. Syndromes of TGA, towards a classification. A study of 153 cases. Journal of Neurology, Neurosurgery and Psychiatry. Oct 1990 53(10): 834-843 retrieved from:
​https://www.ncbi.nlm.nih.gov/pmc/articles/PMC488242/
Jaffe R, Bender MB. E.E.G. studies in the syndrome of isolated episodes of confusion with amnesia “transient global amnesia”. J Neurol Neurosurg Psychiatry. 1966;29(5):472–474.
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Juskenaite, A. Mental stimulation of future scenarios in TGA. Neuropsychological. Oct 2014 Vol 63:1-9 retrieved from:
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Spiegel, D. TGA: current perspectives.
Reporting on Our Attendance at the
World Orphan Drug Congress
Washington, DC
April 25-27, 2018
by Richard Holl
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In February 2018, I contacted the National Institutes of Health regarding their upcoming March 1, 2018 Rare Diseases Day conference. They offered us an opportunity to display a poster explaining TGA and to have an information table at that conference to introduce the TGA Project 2018 community to the larger global rare diseases community.
From that simple homemade info booth came such an awesome outpouring of support that we were invited to attend the World Orphan Drug Congress 2018 (WODC) in Washington April 25-27, 2018. The WODC was organized by Terrapinn Global Events, Inc. It was their staff at the Rare Diseases Day that offered us two delegate passes at no charge to assist us in our mission. Their pre-conference web site allowed 20 minute face-to-face speed networking meetings to be arranged ahead of the conference.
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Understanding the Impact of Arranged Meetings:
As a new patient advocacy group, the TGA Project has entered a realm that wasn’t expected. The conference format consisted of a pre-conference day of seminars after the opening remarks and introductions. The second day was filled with more seminars and the pre-arranged meetings. The final day had three components: follow-up or re-scheduled face-to-face meetings, more seminars, and time to explore the various vendor exhibits. The overall program had seven tracks:
1. Clinical Development
2. Commercial Track
3. Global Market Access
4. Gene Track
5. Rare Disease Advocacy
6. Pitch/Partner
7. International Patient Group Sessions
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Opportunities for TGA Project to Establish New Relationships with International Patient Advocacy Umbrella Groups and Specific Rare Disease Organizations:
When we met the Terrapinn staff at the March 1st Rare Diseases Day, their suggestion was to leave our display booth home and attend as delegates to free our time blocks. We followed their suggestion and we were very thankful that we did. This schedule allowed us flexibility that manning a booth wouldn’t. That was the key to our successful 3 days of networking.
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Summary of Day 1:
Registration and check-in
Opening remarks
Morning seminars: patient registry and legislative updates
Vendor displays and exhibits
Face-to-face meetings:
Finland with Katri Asikaninen
Bulgaria with Vladimir Tomov
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Summary of Day 2:
Face-to-Face Meetings:
Canada w/ Dunhane Wong-Rieger
South Africa w/ Helen Malherbe
Columbia w/ Angela Chavez
Brazil w/ Gustavo San Martin
India w/ Harsha Rajasimha
China w/ Kevin Huang
Japan w/ Yukiko Nishimira
Denmark w/ Birthe Byskov Holm
Sweden w/ Beata Ferencz
UK w/ Alastair Kent
Russia w/ Denis Belyakov
Malaysia w/ Sook Yee Lim
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Summary of Day 3:
We had a few rescheduled meetings and plenty of time to visit the various vendor exhibits. The Terrapinn staff was great to all of us in helping to shuffle reschedules and table assignments via their email and texting system that we logged into every morning for ongoing changes. The vendor exhibits were far more advanced than our 7 months of growth. We had prepared a 10 page white paper portfolio as our primary handout. We also had a simple tri-fold brochure and colorful business cards for exchanging. The vendors treated us as welcomed guests with genuine concern for our new community. There were free goodies, brochures, catalogs, and lots of candy; but the time each vendor took with us as we made our rounds the three days was impressive. Many of the vendors would see us several times a day in passing and would check to see how we were fairing or would introduce us to someone they felt we should meet.
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Location of the Conference:
Gaylord Resort National Harbor, Washington, DC
Grand Ballroom, adjoining meeting rooms, and main balcony overlooking the Potomac
Our favorite location – the seating area of the Maxifying Life networking area
As we stayed off-site with family, we did not experience the hotel accommodations
Breakfast and lunch buffets were free all 3 days
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In Closing:
Terrapinn Staff: Semen Sen, Daniel Friedman, Claire Murphy, Fred, Joe, etc. were exceptional in providing us a networking opportunity to us that was priceless. The logo “Spark Something” is just what our newly formed TGA community needed. Email thank you notes have been sent and follow-up conversations are underway.