The Positive Impacts of Your Donations Explained

(Thank you, Laura Mitic and the Bluefield Project for all you do and providing feedback so we can share with the world the great things you are doing).

Post overview.  -

1. Analogy to add perspective to what frontotemporal dementia (FTD) is
2. Summary of what your previous donations have gone towards and the benefits so far
3. Details and explanation of hope for a cure/prevention

1. FTD Perspective

To the audience:

If this were in person, I would ask you to close your eyes as I take you on a journey.  

In lieu, I’ll simply ask you to read on with an open heart:

I'd like you to imagine yourself being relocated to a remote Chinese village.  Somewhere where you do not speak the language nor can you read or understand it. 
You've been sent there alone, and not by choice.
Now imagine, you've been told you will be there for the remaining days of your life.

At first it would be a struggle, but you, think, "I'll be resourceful and adapt: body language, photos, and just plain pointing goes a long way."

Now imagine, despite immersion into the culture and language, your comprehension declines the longer you are there instead of improving.

You look at a menu or any written instruction and it becomes more and more foreign to you every day.

Your intelligence is still intact.  You are aware of what is happening.  But you are alone in this foreign village where you cannot grasp what people are saying, you cannot read the written language, you cannot write it; even if you are looking right at it, your brain cannot tell your hand how to replicate it.  Before you know it, your writing is that of a child's.

The world is hustling and bustling around you, but you can’t keep up. 

Your ability to speak, slowly, deteriorates as well; until after a few years in the village, you have lost your voice altogether. 

And then, comes the physical decline.   Incontinence, walking and balance declines, muscles stiffen as they begin to atrophy.  Eating, now a challenge; swallowing is no longer instinctual….

In 2008, my mom, at the age of 56 was sent to a foreign village.  My grandmother quickly followed.

That village is called frontemporal dementia (FTD).  For some, no one knows why they get sent there.  In my family's case, we have one of the familial forms of FTD, the genetic mutation-- FTD-GRN.

In a nutshell, “FTD-GRN is a rare, early-onset and rapidly progressive neurodegenerative brain disorder that can affect behavior, cognition, language and motor skills, due to a reduction in the progranulin protein”...it is fatal.  (FORUM Pharmaceuticals Press release, Oct 2014).  For anyone in the family that was passed the gene, now live with the 50% risk of passing it on to our children. 

Three years ago, on March 13, 2013, after five years of FTD entrapment, Mom took her final breath and let go.  She was only 61. She lives on through her husband of 35 years, 5 children and a growing number of grandchildren (almost 7!)

For the past three years, all of you have helped raise over $15k, in memory of my mom, Mary Hall.

All proceeds have gone to the Bluefieldproject based out of UCSF (and collaborates with other researchers across the U.S., Canada and Europe). 

But what has been the benefit to your donations to date?  Below explains what your generosity has impacted.

 

But first and foremost:

~~~~Thank you~~~~~

~~~~~~~~~~~~~~~~You have made all the difference~~~~~~~~~~~~~~~

The skinny: 

Because of all of you, there is progress and hope.  Your donations accelerated the preliminary research which secured a larger grant for clinical trials!!  On people, not rats. Real clinical trials!  I repeat:  Clinical trials for FTD with GRN Mutation, have been funded!!!

Read on to learn more on:

• Details on how the trial came to be
• What the trial will entail
• Details on how you find out about other clinical trials occurring and more info FTD in general.

While we still have a long way to go, thanks to all of you, we are on our way.  If there is any silver lining to having a genetic mutation that causes dementia in the prime of one's life, rapidly declines and is deemed fatal ... FTD-GRN is the "low hanging fruit" and your donations have given my family and the other 100s of thousands caregivers and affected TANGIBLE HOPE.  We still have a long road ahead of us.  Trials can take years, if not decades.  But this is a huge step in the right direction

Mom would be proud and humbled, as we are as well.

With Love,

~The Hall Family~

2007 - Just a year before diagnosis, Mom, Dad and Heidi celebrate Tina graduating.

The Details:

As we all know, the research and medical world is not cheap.  On a shoestring budget, devoted doctors (Howie Rosen, MD at UCSF and Brad Boeve at Mayo Rochester) have been collecting research data, mostly in the evenings and weekends, for 10-15 years.  

Drs. Rosen and Boeve have collected research data on several hundred subjects (patients and unaffected relatives participating in research programs) from families with known FTD mutations. These research data included extensive clinical assessments, structural and functional brain imaging, and blood and CSF samples. In many cases, these data were collected prospectively, before we knew gene mutations caused FTD, with the expectation that they could be used in exploratory studies. As our understanding of the genetics of FTD increased and patients were genotyped, this became possible. Drs Rosen and Boeve aimed to mine these data to better understand changes that occur with familial FTD over time - and indeed they were doing so, on a shoestring budget, at night and on the weekends, but it was slow going.  They needed help organizing and parsing their data.  

Your donations went to support two research assistants (one at each center) to collate and analyze the data, thereby accelerating the completion of the analysis. Their completed analyses were included in an NIH grant application that proposed studying changes in familial FTD patients over time with additional (in some cases, newer) techniques. This kind of longitudinal study is key for estimating rates of change across clinical stages.  In turn, knowing rates of change across clinical stages is key for understanding whether drugs are efficacious in slowing or reversing disease. So this is a very important study, but it's difficult to get funded because one needs to demonstrate

1) an existing infrastructure and the ability to collect these kind of data and

2) preliminary data that look interesting enough to convince others that limited federal research dollars should be spent here.

In fact, Drs Rosen and Boeve had twice applied to the NIH for funding but had been denied based on lack of preliminary data.  With the inclusion of these new data, which was funded by your donations, they were awarded the grant -- details of their award can be found at http://projectreporter.nih.gov/project_info_description.cfm?aid=8760412&icde=22317742



2014 - Mom was survived by her father ("Grandpop/Jack" and 5 (soon to be 7) grandchildren (L-R: Emma, Henry, Finn, Lily and Josh).  We will carry on, but we will never forget.



About the trial:

The below is provided by Bluefield project and excerpt from the FORUM press release explaining the significance and hope of this trial: 

“The trial will focus on what is known as FRM-0334. A mutation in one of the two copies of the progranulin gene that an individual carries* results in abnormally low levels of progranulin protein and culminates in the development of FTD.  

(*Note: (you receive a copy of progranulin from each parent, see the post on the science on the March 13^th, 2014 –“It’s Already Been a Year; FTD/PPA Explained:  here” for more details)

Therefore, drugs that elevate progranulin levels by increasing gene expression from the second, unmutated copy of progranulin hold promise as potential therapeutics if they are able to restore levels in mutation carriers.

...FRM-0334 is a brain-penetrant histone deacetylase inhibitor (HDACi) that increased progranulin expression in cultured rodent neurons and, most importantly, in cell lines derived from patients carrying progranulin mutations. Phase 1 safety studies [completed] showed no toxicity or side effects. 

And now, on to phase 2 – clinical trials:

FORUM’s clinical trial will enroll 30 individuals at multiple participating research sites across the United States and Europe. Individuals must carry a mutation in progranulin and know their mutation status. Trial participants will receive either FRM-0334 (low or high dose) or placebo for 28 days, and progranulin levels in both plasma and cerebral spinal fluid will be measured before and during the dosing regimen to determine if FRM-0334 raises progranulin protein levels.”

2007, a year before diagnosis, - I am so grateful for Mom to see me graduate!

Want to learn more?  Below Additional details and links:

Laura Mitic, from the Bluefield project explains more here: http://www.bluefieldproject.org/news/phase-2-trial-in-progranulin-deficient-ftd-announced   

Interested in learning what other dementia related clinics trials are out there?   Another great place for clinical trial info is the federal website - https://clinicaltrials.gov/ct2/show/NCT02149160?term=FRM-0334&rank=1

Two Years

First – I apologize in advance, this post is an explosion of thoughts, and may not be very orderly...

March 12^th, 2015...

As I was getting ready for work yesterday, I got a text from a friend back home saying “Thinking about you all today.”  I was most definitely confused… but also running late (as usual) so I temporarily dismissed it and continued to get ready. 

Fast forward 30 minutes, I’m pulling into the parking lot on base and I start racking my brain again…what did Jess mean by that text??

And it hits me.

I am instantly overwhelmed.  Tears threaten my eyes and the wind has been knocked out of me. 

Today is March 12^th.  Mom would take her last breath tonight, about 1am, two years ago.

I forgot.

I forgot.

How could I forget???  What kind of person am I?

And now it’s all flooding back.  I’m not sure if it’s the guilt of forgetting or just the shear reality check (or both) but I suddenly am overwhelmed and wanting to hug my mom more than anything in the world…but I can’t.

…

To catch a few of you up, I relocated from Pittsburgh to southern California for a job on Marine Corps Base, Camp Pendleton in December.  The job opportunity was one I did not want to pass up, but I’d be lying if I didn’t admit I also saw California as a fresh start.  My family and I spent almost 6 years watching dementia take away my mother and grandmother.

And since March 12^th, 2013 – we’ve had to bury my mom, followed by my grandmother 6 months later (who also had frontotemporal dementia (FTD), and then just this past October -- our grandpop—a man who loved his wife so much that he stayed by her side for 67 years—and until my grandmother took her last breath, slept on a chair next to her, refusing to leave her side (if that’s not love, I don’t know what is). 

Then to top it off, in early Nov, I had to put Woody down – Woody was my mom’s dog that eventually became mine.  He was in our family for 15 years.

So, needless to say, it’s been an emotionally exhausting few years.  And since I’ve been out here, I’ve selfishly taken a break from it all.  I haven’t finalized this year’s benefit yet (thinking pig roast, everyone???), I haven’t written on here in ages…

I’ve relocated the FTD bracelet from my wrist to my gear shift in the car….

Heck, most people out here know nothing about my past at all.   As Christina put it, “we are in the quiet after the storm.”

….

My friend’s text brought me back to reality.  And while it’s not an easy one to face – I spent most of yesterday with a very heavy heart and holding back tears—this is reality none the less.  

FTD is a part of my family's past, it will be part of our future, and while I may have forgotten, for a moment, yesterday morning, FTD is part of everyday life too, even in California.

Every time I mess up a word and say “drive” when I meant “fly” or “spoon” when I meant “knife” – my throat tightens and my inner voice screams “FTD! FTD! It’s coming!!” and I suppress my fear and externally laugh off the mistake to the surrounding audience.

Every time I see my nieces and nephews, I pray to God they are safe and ok. 

I have not forgotten.

And so, in tribute to my mom on her death anniversary, and to remind everyone out there whom also have loved ones with dementia, that as hard as it is to see them in their current state – that’s not them, that’s the disease; I want to close by sharing one of my favorite memories of my mom before she was sick.  A memory that demonstrates her true personality – one that always thought of others first.

/////

When I was 20, I studied abroad in England.  My 21^st birthday was celebrated over there and I returned later on that summer.   On my return trip, I had a 7 hour layover in Chicago; which I was not looking forward to.  When I landed there, I turned on my phone for the first time in 8 months.  I quickly skip through all of the very outdated voicemails, but stop in my tracks when I get to the very last one.

It’s my mom’s voice.

“Hi Betsy!!  I wanted to surprise you in Chicago and take you around the city…but as usual, it’s raining in Pittsburgh and my flight is delayed. I’ll see you soon!  Love you!”

I couldn’t believe it.  My mom was flying to Chicago to spend a whopping 7 hours with me.  Of course, I’m crying with happiness and laughing at the ironic circumstances. 


My mind instantly gets to work.

Paper, I need paper.

I have none. 

I go straight to the bathroom – paper towels will do.  I find a table and lay out my paper towels and begin to write.

I hold up my masterpiece.  “MOM, Welcome to Chicago.”  Perfect!

I look up her gate number, and head there with my “sign” – ready for her arrival.

And I wait.

…

And I wait…

Nearly FIVE hours later, my mom arrives.  I give her the biggest hug.  She looks at me and says, “Well, I think we have just enough time to buy you your first legal beer in the US before we need to get on the plane back to Pittsburgh.”

And we do just that.  I did not see Chicago.  But I don’t care.  I had my first legal beer in Chicago O’Hare with my mom, who flew there only to give me a hug, tell me she loves me, and get right back on a plane.

~I love you, mom.  I miss you, mom.  And I wont forget.~

The Quiet After the Storm

~Written by Christina (Hall) Valencia

It has been almost 2 years since Mary (Mom) died, 18 months since Margaret (Nanny) has died and almost a year since our last post. Our family is experiencing what I referred to in previous posts as the quiet before the storm, except that it is now a quiet after the storm.  

While the quiet after the storm has allowed us to live a little without Frontotemporal Dementia (FTD) on our brain at every turn; it has not taken the want to make a phone call or share a story away. 

It is giving us time to prepare for the next wave of storms. But what does that mean?

To me it means, making hard decisions about what is best for my family and me. I have made a decision that at age 40, I will get tested for the gene. At 40, my girls (now 3 and 4) will be 11 and 12, old enough in my mind to understand and be able to formulate questions. 

I will have a plan for end of life decisions.

This quiet has also allowed me to enjoy my kids without the guilt that I felt initially for even possibly having the DNA that could negatively impact their futures. Although they cannot remember it, they re-share the stories that I have told them. Emma will remind me how Grandma Hall would try to catch her before she fell as Emma was learning how to walk, and Lil will tell me how Grandma Hall used to love to hold her. Both true stories created by the storm. These are good memories.

The quiet has brought Mary’s five children together, with their spouses, children, father and Mary’s father for a grand vacation this past August at one of Mary’s favorite places, the Jersey Shore (well not the Jersey Shore, but a place very close to it). At the shore we were able to have the kids who live states apart forge irreplaceable memories. My girls will never forget how cousin Henry (age 2) caught a fish with his bare hands, how he touched a dead puffer fish that had washed ashore. How Aunt Meggie, really had the baby that caused her to waddle the 1/3 of a mile to the beach, holding a row of hands, 8 in all, trying not to get caught on the street sign poles....How one day we watched as hundreds of dolphins migrated northward. 

Each of those memories and appreciation for what we have came to fruition because of our storm of dementia and the quiet that followed.

The challenge of the quiet, is the unknown longevity of it.  Hopefully it will last, but as it does, it is our responsibility to keep the energy of our initial drive to help raise money to cure FTD and raise FTD awareness alive.

This blog is meant to inspire and remember, and I challenge those who read it or have read it to share a short, long or short, about themselves or loved ones, either before, during or after their own experiences with dementia. Our family will be hosting the second annual Mary Hall Benefit for Dementia Research this summer. 

Please stay tuned for more information.

~In Memory of Jack Flanagan, Father, Grandfather and friend to everyone he ever encountered.  A man whose love kept him by his wife's side for 67 years, even as dementia took her away~

March 13th, 2014 -- It’s already been a year. FTD/PPA explained.

March 13, 2013 about 3am – Mom had finally had enough of FTD/PPA and let go.  Today is March 13^th, 2014.  I can’t believe it’s been a year.  On November 3^rd, our grandmother “Nanny” also had had enough of FTD and took her place with Mom. 

While I think my entire family is thankful 2013 is over; we are thankful Mom and Nanny are finally “whole” again and at peace and “we are thankful for everyday we've had with them and every day wont – bc that is one less day they are suffering.” 

While this is all true, it is independent of how much we miss them both.  Too often, I find that I have forgotten, and I pick up the phone to call my mom and tell her news, and then reality hits.

Breath gone, stabbing pain in the chest, stinging in the eyes.

Tomorrow – March 14^th, I will turn 30, and Mom won’t be there.  One day I hope to get married and I’ll have to go wedding dress shopping without her.  My kids will never meet her.  

It’s not fair.  

But no one ever promised life would be.

I smile at this because I can hear my mom’s voice.  So many times growing up, I would want something and she would say no, and I would say it’s not fair and her response would be, “Tough.  Life isn’t fair.”

So yes, today is one year from when Mom let go.  It feels like yesterday and it hurts just as much today as it has for the last 6 years.  But, I have two choices.  I can cry about it (which, trust me, I have and will some more) or I can do something about it.

Our family chose the latter. 

As you all likely know by now, our family is hosting a Memorial Benefit on April 26^th, 2014 (See EVENTS tab above for details).  Last year, with your help, we raised over $5,000 for The Bluefield Project to cure dementia.  Our goal this year is to exceed that.   We’re off to a good start—check out the donation tracker to the right!

If you have been following this blog, you know it was FTD that my mom and nanny had.  And you also know that it is genetic. 

However, if we are going to ask you to support/attend a Benefit (which will be lots of fun so you should definitely come!), I think it is fair I take a pause and explain some science behind FTD and more importantly – why do funds go to the Bluefield Project.

Bottom line:  Bluefield Project and the CFR= hope.  They focus on the genetic FTD our family is inflicted with—with they believe will that the findings will have parallel benefits to other neurodegenerative diseases, including Alzheimer’s, ALS, and cerebral traumatic encephalopathy – which is only now receiving attention in the area of contact sports.

Keep reading for a little genetic FTD 101 lesson. In advance, thanks for listening J (Sources for the below: a mix of U of Penn, Bluefield Project, Alzheimer’s Association and The AFTD)

What is FTD?

FTD used to be referred to as “Pick’s Disease.”  Today, Frontotemporal degeneration (FTD) refers to a family of disorders characterized by the progressive loss of neurons (brain cells) in the frontal and temporal regions of the brain.  Although the precise cause is unknown, FTD is thought to result from abnormal accumulation of misfolded proteins, which disrupt, and eventually kill, brain cells. 

What are early signs/symptoms?

Patients with Frontotemporal degeneration can present with different clinical symptoms, ranging from behavioral impairments to language or motor dysfunction.  Mom and Nanny were first language impairment and eventually motor dysfunction as well.

If you had to describe FTD in one sentence, what would it be?

FTD strips you, in your prime (40-60yrs, typically) of everything that makes us human -- insight, empathy, communication (ability read, write, understand), and sometimes personality.  

Is it treatable?

No, as of now, FTD is fatal upon diagnosis.  There is no treatment or cure.  There are some drugs that help ease symptoms, but nothing to actually treat the FTD.

But I've never heard of FTD - it must be rare.
Actually, it's not. It's the second most common form of dementia for younger generation-- even more common than Alzheimer's -- it's just often mis-diagnosed as depression/anxiety/Alzheimer's or not diagnosed at all.  With awareness and education, more and more cases are being discovered.

What are the different subtypes of FTD?  

Type of FTD	Clinical Description	Description of Possible Symptoms	Type of Pathology seen in Brain
behavioral variant FTD (bvFTD)	Changes in Personality, emotions and/or behaviors	- Hyperal (ex: eating only sweets or a certain type of food) - Disinhibited actions (ex: making inappropriate comments) -Apathy, lack of motivation to do things -Lack of Insight (unaware of the impact of symptoms on others) -Impaired decision makings	- Associated with the Tau or AD pathology
primary progressive aphasia (PPA) (nonfluent varient, semantic variant, and logopenic variant with subtle differences)	Deterioration in the ability to produce speech, understand words and recognize objects, ability to retrieve words in speech	- Hesitant, effortful speech - Difficulty naming objects or recognizing the meaning of words -Difficulty recognizing familiar objects or faces	- Nonfluent - most often linked to the tau protein;  - Semantic - most often linked to the TDP-43 protein -Logopenic - Most often associated with Alzheimer's (AD).
Corticobasal Syndrome (CBS)	Involuntary movements and/or cognitive dysfunction	-Apraxia ro difficulty w/ use of tools -Executive or social deficits - Cognitive problems such as simple math and difficulty with spacial orientation.	Tau or AD associated
Progressive Supranuclear Palsy (PSP)	Deterioration of gait and balance	-Hallmark feature is inability to move eyes up and down.   - May also have other FTD subtype symptoms	Tau Protein
FTD with Amyotrophic Lateral Sclerosis (ALS)	Same changes seen in other subtypes of FTD accompanied by deterioration of the motor neurons	-Any symptoms associated with bvFTD or PPA -muscle weakness and atrophy -muscle cramps -difficulty swallowing -slurred/muted speech	TDP-43 Protein

What did Mary have? 

Both Mary and her mother (as well as our Uncle Steve, great grandmother and great great grandmother), have the FTD linked to the TDP-43 Protein.  Mom and Nanny both showed symptoms of the PPA subtype and FTD with ALS (commonly known as Lou Gehrig’s disease) subtype.

If it’s genetic, what are the odds of passing it on?

It's 50% (but I think "100% or 0% is more accurate).  For the subtype our family has and the subtype Bluefield Project has started clinical drug trials -- it's like brown eyes - it's a dominant gene that we were either born with or do not have at all.  

Let’s have a short science lesson, shall we??

Genetics 101:  Our genetic material, DNA, is stored in every cell of our body.  DNA chains are then packaged into larger units call chromosomes.  We have 46 chromosomes.  They come in pairs and in each pair – one is from our mother and one is from our father (22 pairs are “autosomal” and the 23^rd pair determines our sex).

Genes are specific segments of DNA that carry the instructions for making proteins.
Proteins are molecules made up of a chain of amino acid building blocks.

Proteins are used by the body for maintain its structure and function.  Because our cells have two copies of every autosomal chromosome, this means we have two copies of each gene.

Remember this for later:

A mutation is a change in the DNA sequence; in other words there is a “spelling mistake” or typo in the instructions to make a protein.  So when there is mutation, that copy of a gene has the wrong instructions and so it makes a protein that does not function correctly in the body or is not produced in sufficient quantity.

(It is important to note – not every change identified in the DNA is automatically considered to be a disease-causing mutation.  Some are not harmful at all, but instead normal variations in the genetic code.)

So, what does that have to do with FTD?

Most cases of FTD are sporadic—no known family history.  But in some cases it is not.  See the below chart – our family is in the yellow.

A few terms: 

“Hereditary” indicates that a trait or disease can be directly transmitted between parent and offspring.

“Familial” is a very broad term used to indicate that more than one person in the family has a train or disease.  Familial denotes that there is a possibility of a genetic cause.

Now, remember “big R” and “little r”” from school? 

R = autosomal dominant.  “Autosomal” as noted above, means it’s from the 22 pairs of chromosomes that are identical in both males and females.  So both genders have an equal chance of being affected if a mutation is present on a gene in an autosomal chromosome.  “Dominant” inheritance means that only one copy of the gene has to have a mutation to cause the disease.

That’s where the 50% comes into play.  Dad has two “good” genes.  Mom has one mutated and one good one (remember, they come in pairs).  The mutated gene is big R in the box. 

Mom:	R	r
Dad:	r	r

We (the offspring) got a little r from our father since he has two little r’s.  There was a 50/50 shot that we got the little r from our mother.  If we got the little r, the mutated gene does not exist in us, we cannot pass it on.  “Skipping generations” is a myth.  Two little “r’s” = no mutation.

But If we have inherited the big R, we will eventually be diagnosed and now also have a 50/50 shot of passing it on. 

What is the mutated FTD gene called?

• There have been a few mutated genes discovered, but to keep the conversation specific to our family, it is GRN.
• GRN was only discovered in 2006 (mom was diagnosed in 2008). GRN codes for the protein “progranulin.”  Individuals with GRN mutations have abnormal accumulations of the TDP-43 protein in affected neurons.
•  Average age of onset is 59 years—Range is 35 years old to 87 years old (Mom was 56, Nanny was 80).   
• Why the age difference, you ask?  This will be discussed in a future post—this is a mystery that is still unraveling!

What does not having enough progranulin protein have to do with FTD?

Why not having enough progranulin causes frontotemporal dementia is unknown, but it’s the question driving research in frontotemporal dementia labs around the world. Progranulin is involved in a diverse range of biological processes including inflammation, tumorigenesis, development and wound repair. It is widely expressed in most tissues in the body, but it’s not necessary for life. Model animals, like mice and worms, can live and reproduce even without progranulin. Why loss of progranulin seems to preferentially impact the brain even though it’s involved in a host of processes is unknown.

What does loss of Progranulin do to brain cells?

The end result is that loss of progranulin causes brain cells to die. (And then literally, the brain shrinks). We don’t understand how this happens, but this is one of the major research focuses within Bluefield and the CFR. Recent data suggest that loss of progranulin results in an abnormal immune response in the brain – researchers are working to understand how this might cause neuron death.

You mentioned ALS?

Yes, ALS is also a form of dementia.  While ALS can exist on its own as well, research has confirmed links to certain FTD subtypes and ALS.  And the TDP-43 is one of the links.  (I will discuss this more in a later post as well).

AND FINALLY, who is the Bluefield Project/CFR and why should I donate anything toward them?

• As noted above, the Bluefield Project = Hope.  REAL HOPE.    If there is any silver lining to having hereditary genetic disease, it’s the Bluefield Project.
•  It’s tough to find a treatment or cure when you don’t even know the cause.   But the cause –  TDP-43- is known in my family’s case.
• The Consortium for Frontotemporal Dementia Research (CFR) was established in 2008 by the founders of The Bluefield Project. Its mission is to find a treatment or cure for frontotemporal dementia though systematic collaboration of best-in-class scientific investigators.
• Bluefield Project is based out of UCSF and manages a consortium of 16 principal investigators at nine Universities, who are funded to pursue research into the genetics, biology and translational research of the disease.  This includes international institutes as well.  In other words—they are SHARING information and COLLABORATING instead of keeping their research a secret and competing, which is so often the case in research. 
• They are 5 years into a 10 year mandate to find a treatment or cure for FTD.
• HOPE:  Led by a team composed of the highest caliber basic scientists and renowned clinical neurologists, with an aggressively funded research agenda and a unique research model, the CFR firmly believes that a cure for frontotemporal dementia is possible. 
• Based upon the research they have supported, the first clinical trial with a drug to treat FTD was initiated in 2013. Recognizing that they do not have the funds to take a drug through registration trials, they have focused on using their research and translational science to identify a handful of potential targets in FTD, along with a number of drugs that engage these targets.
• Bluefield Project was founded by a family (from Bluefield, Virginia) with the same genetic FTD who decided to do something about it.
• Bluefield believes that the findings they have made in FTD will have parallel benefits to other neurodegenerative diseases, including Alzheimer’s and ALS and cerebral traumatic encephalopathy - which is only now receiving attention in the areas of contact sports.

In Conclusion,

There is hope and our family will do everything we can to help.   I'd like to share what my brother, Adam wrote today:

"PPA is cruel, there is no treatment, no preparing, no numbness, and the progression is just slow enough it challenges every bit of faith in a god you have. 

Not only did she have to watch herself die, but watch herself lose herself. We couldn’t say goodbye because it was too early, she couldn’t say goodbye because it was too late.

When I put my children to bed and the room is quiet, I think to myself I am grateful they are too young to remember the suffering, but it breaks my heart they will never feel the comfort of her presence and the reassurance of her voice. I know I will never be the parent or person that she was, nobody will. We can only keep her memory alive and strive to live up to her example. 

Maybe with enough awareness, the next grandmother will be able to tuck her grandchildren to bed.

I love you mom."

Mom’s mantra was “Deeds not words shall speak me.”  Mom always put herself second and family, friends and the community first.  It’s time for us to carry on her mantra. We are so quick to share funny pictures and stories on facebook/twitter etc.  Please consider sharing this post and supporting the fight against dementia by supporting Bluefield research by clicking here.  

Each and every one of us can tell a story about someone with dementia.  They never gave up on us, let’s not give up on them.

Thank you for listening.

Mom, Nanny – we love and miss you both.

~The Halls~

(if you would like to read more or have a concern about a loved one: UCSF has great information at http://memory.ucsf.edu/ftd/overview/ftd )

2014 Mary Hall Memorial Benefit is on!!!

Spring 2013, in memory of Mary Hall, Heidi and Betsy ran the Pittsburgh Marathon, and with your help, we were able to reach our goal of $5000.

This year, we wanted to do a fundraiser that gave back to the contributors.  To this end, we bring you the 

Mary Hall Memorial Benefit Bash!  

And....

You're Invited!  Click on the EVENTS page above for more details and to PURCHASE tickets!

Hope to see you there!!