Tag Archives: support

Thank You For Being a Friend

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#2020.  Aside from 2008, this year has been the pits.  The struggles and difficulties all of us have faced continue to be a burden and we’re all hurting, so let’s hope these next three months go quickly and easily.

Nobody could have predicted the ever-changing landscape of the world we live in, but planning events and fundraising has been especially difficult.  Despite all of this adversity though, we reached our goal at Brainstormin’ thanks to the support of friends, family and the community!  Now on to the Path of Hope, albeit virtual this year, and we hope it will provide the same sense of community and togetherness as previous years.  There is still time to sign up!

Nonetheless, despite a global pandemic and civil unrest, brain tumors have not stopped and they will not stop until a cure is found, and neither will I.   Witnessing the strength and courage of the many patients and families I talk with on a weekly basis keeps me going and gives me the drive to do my part to offer assistance and provide a sounding board, but to also keep their spirits up and that hope alive.  Every day presents a new challenge, whether it is a last minute decision the day before our event to postpone due to weather so everyone can be outside, or planning a virtual 5K for the entire state of Connecticut, and for reasons such as these, finding time to write has escaped me and I apologize.  Fortunately, my family has come to my rescue and the entry below was penned by my parents – thank you, Mom and Dad.  Until next time…

As we told Chris, he has once again managed to steer the ship through adversity and roll with the punches.  

This past month has brought much reason to celebrate for Chris and our family.  We had another very successful Playing for the Cure: Brainstormin’ event at Stony Creek Brewery and appreciate all who supported again and helped Chris and the CTBTA reach their goal.  There were moments during the summer where Chris privately pondered canceling the event, but his commitment to the cause and the brain tumor community remained his driving force.  Seeing him give back and his desire to help others facing this disease gives us great pride.  He has come full circle, going from the patient to an advocate helping others.  There were hard decisions to make in planning the event though, including how many people to cap the event at to ensure each attendee felt safe and following the state’s evolving guidelines.  However, it wouldn’t be an event in which Chris was involved in without drama.  The day before the event, there were downpours and thunder and lightning in the forecast.   As my other son Stephen said following the event, Chris did his best Peyton Manning impression – he surveyed the field, stepped to the line and called an audible and then threw a touchdown in deciding to move the event to the next week without a hitch.  The evening was perfect and everyone raised a glass of Junebug and celebrated all who are fighting and remembering those we have lost.  It was a night to remember.  

The following night, Chris was honored as a 40 Under Forty by the Hartford Business Journal. 

This year’s theme was appropriately titled “Coping During Covid” and focused on each honoree’s perseverance despite the difficult environment caused by the coronavirus.  While we were sad that we could not join him and celebrate this accomplishment in typical fashion, we are very proud of his accomplishments and look forward to seeing what is in store next.  

We are thankful for each of you for being a friend to Karen and I, but to Chris as well.  As Chris said at Brainstormin’, one of the blessings in disguise about a brain tumor diagnosis are the friends you make along the way and we wholeheartedly agree.   Nobody should have to go through this journey alone and we are grateful for all your support and look forward to watching Chris continue to pay it forward with your love and support.  

Thank you, all.  

The Show Must Go On

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Dear Family and Friends,

I hope that you and your family members are safe and well during this difficult time in our lives.  Navigating the year so far has been difficult, but the uncertainties and day to day changes feel oddly familiar…

It was twelve years ago today that I underwent my first brain surgery for the removal of my tumor, but yet, it still feels like yesterday.  I remember the ride from my eye doctor to the hospital.  I remember the feeling of surprise upon hearing how large the mass was and the shock and awe of the doctors and nurses examining me.  I can remember the night before surgery, laying in the hospital bed and preparing myself mentally.  In that moment, erased were the days of being young and carefree.  Instead, I had to grow up in an instant.  I had no time to process the news I had just heard or contemplate the what-ifs.  On July 2, 2008, the course of my life changed forever, but proudly, I know this was for the better and I owe that to each of you.

As I sit here today, I look at the story of my life and career to this point.  Growing up, I never really knew what I wanted to do, but I ultimately decided to pursue law because I knew I wanted to help people and do my part to effect change.  At the age of sixteen, I landed my first job with a well-known Connecticut law firm and worked there for the next sixteen years until I ultimately listened to my heart and decided to help people in a different way.

Executing the business of the CTBTA is extremely rewarding and humbling, yet it presents so many challenges, especially now as I manage a nonprofit during a global pandemic.  We have been impacted financially and emotionally, like everyone, but yet, brain tumor diagnoses have not stopped.  Patients still need surgery, perhaps followed by radiation and/or chemo.  Some of these patients have been required to put those treatments on hold due to the risk of Covid-19 in the hospitals, while some are experiencing the isolation and enhanced PTSD as a side effect of the social distancing guidelines and anxiety about catching the virus.  Support and grief groups have turned into virtual Zoom calls, both lacking that critical personal, human element.  Difficult work, to say the least.

Nevertheless, the CTBTA has been hard at work, brainstorming ideas and holding out hope that our events will offer some in-person components.  I am constantly humbled by the generosity of the community, and wish I had additional volunteer opportunities for each of you.  So many of you have been tremendously supportive since day one, and now, more than ever, we need additional help to support our programs and our quest to advance treatments and find the cure.  Thanks to you, I am here, paying it forward and so I offer to you the chance to join me once more.

Should you wish to donate and support our mission, please visit here.   While we understand the financial stress upon us all, every dollar helps and your support will make an immeasurable difference in the life of a patient and their family.

Twelve years ago, there were no guarantees or promises made – it was “just survive.”  By now, you know my quote: “Adversity.  We cannot direct the wind, but we can adjust the sails.”

Here we are, once more, needing to adjust the sails.  I am steadfast in my belief that we will, thanks to friends such as you.

Thank you for standing by me, supporting me and cheering me on over these past twelve years.  I owe it all to you.

Have a safe and happy holiday weekend.

All my best,
Chris

I’ll Be There For You

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The minutes have blended into hours, the hours into days, and the days into months.  The end of 2019 was a blur and so far, the start of 2020 has been difficult.

During these unprecedented and unsettling times, my heart goes out to everyone, from those inflicted with the virus, to brain tumor and cancer patients alike.  And while my priority remains with the care and assistance of brain tumor patients, my deepest gratitude is with the front line workers in the hospitals around the world.  Thank you for your commitment and efforts.  Because of you, we will get through this and as a community, we are Stronger Together.

These are powerful words.  Back in 2016, when the CTBTA adopted them as our tagline, the intent was to embrace the brain tumor community.  However, these two words have quickly became the motto of many within the last month as they remind us that we can all do more to be more compassionate, more generous and more selfless.

We need to be strong for our family, friends, neighbors and strangers.  We need to be strong and supportive of the doctors working hard to keep us healthy.  And I will remain strong and continue to be a friend and supporter for anyone who needs it, but my commitment remains to the brain tumor community.

As our communities continue to adjust to the evolving conditions, one of unfortunate constants will be the diagnosis of a brain tumor. There will continue to be diagnoses of brain tumors and the consequential impact on a family’s financial situation will mount.  Fortunately for you, the CTBTA will continue to ensure that no one has to face this disease alone.  Our focus will remain on improving the quality of life for patients, survivors and their families and on accelerating the discovery of new treatments and cures.  With every new obstacle we are faced with as a result of this growing pandemic, we will adapt and respond accordingly.  Over the past several weeks, I have spoken to doctors and nurses, and have heard from families following their treatment, and am so grateful to be assured that wonderful care is continuing to be provided to everyone in need.

The month of May is “Brain Tumor Awareness Month” and all of us at the CTBTA were looking forward to kicking things off with the Path of Hope on May 2nd, as well as several third-party events geared towards raising awareness of brain tumors.  Given the current situation, with a heavy heart, we have decided to postpone our 5K until the fall.  In the meantime, we look forward to sharing details of a new campaign that everyone can participate in safely and comfortably, so be on the lookout for our announcement soon.  And although our Gray Ribbon Club and Good Grief Group meetings need to be placed on hold indefinitely, we will continue to provide hope and support in every means available.

I remain eternally grateful for your continued support and assistance and look forward to seeing everyone again soon.  Stay safe and well, and please know that the CTBTA and I are here if you need us.

Together, we will weather this storm.

 

Adversity. We cannot direct the wind, but we can adjust the sails.

Blessing in Disguise

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“It’s the scars that make you stronger,
It’s the hard times that make you wise,
It’s the sweet things only time brings,
That arrive like a blessing in disguise.”

You know the story, but eleven years ago, I was fearful and afraid, unsure if I would wake up from surgery, or what my life would be like afterwards.  Yet, things have worked out very well and after another amazing night at our sixth annual Playing for the Cure: Brainstormin’ event on Friday night, I can one-hundred percent say my diagnosis was a blessing in disguise.

As I stood at the podium and looked out to the crowd, all 300+ of you, I was overwhelmed, humbled and proud.  This was our largest crowd ever and I am so glad to see this event continue to grow and help others.  It wasn’t until after I was diagnosed that I heard and met so many people and families affected by a brain tumor and for you to come and be a part of this special event was fantastic to see.  I got to meet many of you and hope you know that you are now part of a special community with individuals who truly understand and get it, so I welcome you into the CTBTA family.  We’re gaining momentum and with special thanks to all of the media outlets that supported this event, especially the Hartford Courant, WTIC-1080, WTNH and WFSB, we will continue to expand our footprint and reach and raise awareness.

On behalf of the CTBTA, I had the distinct pleasure to honor and remember the life of June Rice by awarding three inspiring brain tumor survivors with a “June Rice Courage Award.”

Darcy, Steve and Cesar – I hope you are as proud of yourselves as the CTBTA and I are of you.  You have demonstrated such strength, resiliency and bravery and are an inspiration to everyone.    Thank you for allowing us to share your story and spread hope.  Continue fighting, and know we are always here to support you.

Kim, Melissa and your entire family – what a pleasure it was for us to honor June.  You made your mom so proud with your heartwarming speech, there was not a dry eye in the room.  Though her and I never met, I am grateful that we have connected and hope our friendship will last eternally.  As you vowed to me, you and your family have my absolute support and friendship today, tomorrow and always and we, the CTBTA, are here to support you all.

To all of our sponsors, especially the Yale Brain Tumor Center at Smilow Cancer Hospital , thank you for your tremendous show of support.  I am, and will always be, eternally grateful to you for returning me to good health and helping me find my voice in the quest to work alongside brain tumor centers in the state to help others and ensure that no family goes through what we endured in 2008.   A giant thank you to our Platinum Sponsors, Carla’s Pasta and Specialty Packaging; our Gold Sponsors, iHeart Media and Harte Auto Group; Silver Sponsors included Saint Francis Hospital and Medical Center, Beirne Wealth Consulting, Women on Wealth, BMO Harris Bank, People’s United Bank, Al Mac Motors, Harvard Pilgrim Health Care, Edge Technology Services; thank you to our Bronze Sponsors including Russo, Russo & Slania, Guida’s Dairy, UKS, Blum Shapiro and Unitas Club; and Friends of Brainstormin’ Stop & Shop and Webster Bank.  Events like this succeed because of you, and we hope that you will continue to support us until our mission has been fulfilled.

Friends, old and new, from the bottom of my heart, I thank you.  Erienne and all of the members of Blanket Statement, thank you for joining us and being a part of this memorable occasion, you were amazing.  We also want to thank Carla’s Pasta and Shoreline Cafe and Catering for donating all of the food, and to Beach Donuts for supporting us.  Last but not least, to our partner and friend, Ed Crowley and the staff at Stony Creek Brewery, I appreciate all of your support, enthusiasm and compassion for our cause.  I look forward to sharing the amount we raised with you soon, and planning for 2020 very soon, but until then, let us rejoice and celebrate this achievement.

“It’s the sweet things only time brings,
That arrive like a blessing in disguise.”

The Man

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I took last night to let the news sink in, or at least I tried to, but yesterday’s news brought too much excitement.  I knew the day would come and I was optimistic, but I have still yet to process it.  Yes, yesterday I received the best news ever from my medical team at Yale .  After 11 long years of battling this beast, starting at age 24 which required 5 surgeries, radiation, an onset of seizures and pretty much uprooting my life and changing the course of my career, albeit I am grateful – I am officially “tumor free!”

Upon seeing my doctor walk into the room, my heart sank and I got a pit in my stomach, fearing something was wrong.  Fortunately, that was a fleeting fear as he quickly sported a big smile, proudly pronouncing “It’s gone, my friend!”  Simultaneously, Ashley and I both exhaled a big sigh of relief as smiles ran across our faces.  In an instant, the realization that I had won the battle set in because though my tumor was benign, given its chemical makeup and the history, I knew there was always a chance.   Yesterday however, those fears vanished when I heard he was 100% confident and certain that the tumor is gone forever and looking at the scan myself, seeing nothing but brain and a working shunt, a song ran through my head:

“Somewhere I heard that life is a test
I been through the worst but I still give my best
God made my mold different from the rest
Then he broke that mold so I know I’m blessed”

For more than a decade, my life has been anything but ordinary as I was always hesitant and wondering “what if.”  But now that I know I have five years and with the best doctor out there, I  know this is behind me and I owe it to you, especially my parents.  You have all supported me in the darkest of times, when I thought I would never recover to be able to speak, read or write again, or that I would ever regain the strength lost on one side of my body, and for that I am forever grateful.  So to show my gratitude, I am resolved to pay it forward and help anyone fighting this diagnosis and in need through the Connecticut Brain Tumor Alliance.

When I first joined the CTBTA, I was fortunate to meet Tracey, Greg, Jen, Andy, Stacey, Ron, Kim H., Susan, David, KC, Maria, KPD and Terry.  Since then, the Board and organization has grown and new members have joined, as has our footprint and impact on the state.  But I want to recognize the founding members for taking the chance in starting this organization so that patients, such as myself, don’t have to battle this alone.  I am incredibly grateful for the introduction to you and thank you for embracing me with open arms, welcoming me to the Board and allowing me to rise the ranks to your Executive Director.   Together, we can and will, make Connecticut a center of excellence in brain tumor care and be the resource that new patients and families need.

Thank you all, from the bottom of my heart.  So as one chapter closes, a new one begins…

Don’t Stop Believin’

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Where has the time gone?   Admittedly, and my apologies to all of you, but since starting my new position, my blogging has gotten away from me as I have needed to give more of myself to the position and to get my feet under me.  However, with this work, my commitment, passion and dedication to the cause has only grown.

Santa responded favorably to my list, but the end of 2018 was still difficult.  As the Board and I continued to process the loss of Tracey, the strongest brain tumor warrior I have ever met, I kept asking “why?” but remained committed to the fulfilling our mission.

During our first Board meeting in 2019, a common thread formed – though we were collectively hurting, our commitment and dedication was unwavering.  The CT Brain Tumor Alliance will continue to assist patients and families, serving as a resource to bring awareness, hope and partners together to find the cure and help everyone facing this diagnosis.  The passing of Tracey has been very difficult, but I am so proud of her family, friends and our Board, all of whom are resolved to continue her legacy and push the needle further in helping to make Connecticut a center of excellence in brain tumor care.  I previously mentioned the picture in my office of her and I, and upon arriving every day, I look at it for my inspiration and hope that I can make half the impact that she did.  So, to that end, Connecticut, get ready.  The CTBTA is coming for you and we are moving full speed ahead with two great events on May 4th to kick off Brain Tumor Awareness Month.

In the morning at beautiful Elizabeth Park, which Tracey loved and adored, join us for our annual 5k, the Path of Hope.  If you’ve been to a previous Path of Hope, you have witnessed the beauty of seeing brain tumor patients, their caregivers, families and friends come together for a day of celebration, remembrance, passion and hope.  Building off our recent success last September, we are proud to bring our flagship event to May and begin this great month with a bang.  For further information and to register, please visit: https://www.ctbta.org/events/path-hope/event-info/

Also on May 4th, the CTBTA is proud to host “A Night in Paris.”  This special, one-time event is a dedication to the life and memory of Tracey.  An admirer of all things French, this memorable event will be filled with exquisite French cuisine, an exciting raffle and auction, all cast under the Eiffel Tower and French street signs in the place she loved the most.  Please join us to continue Tracey’s legacy of helping others and giving back.  Along with the members of this fantastic Committee and the CTBTA, I hope to see you there and encourage you to please attend if you can, or purchase a ticket for the benefit of a survivor whom Tracey treasured dearly: https://www.ctbta.org/events/night-paris/

There are just under three weeks from the big day and the excitement and pressure is mounting.  Sure, two events in one day may seem insurmountable to some, but I am determined to make it an exceptional day.  Thanks to our many sponsors who are supporting these events, all of the participants currently registered, and our dedicated group of volunteers, it is our commitment to bring hope to all who are fighting and allow the hospitals we partner with to continue their advancements.  May 4th, 2019 will be remembered as a day of mutual celebration where we all rejoiced and said “we did it!”  Here’s to you Tracey.

So Here’s My Lifelong Wish, My Grown Up Christmas List

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Dear Santa,

As children we believe
The grandest sight to see
Was something lovely wrapped beneath the tree
But Heaven only knows
That packages and bows
Can never heal a heartached human soul
No more lives torn apart
That wars would never start
And time would heal all hearts
And everyone…

It’s been a while since I wrote you and I’m taking a leap of faith as I  write to you again this year, but what do I want for Christmas???

Well, since you asked, here it is.  It’s a bit unusual, but it’s my grown up Christmas list.

This past year, I was named the Executive Director of the CTBTA and the position has been extremely rewarding and fulfilling.  I truly believe that in the not-too-distant future, our state will be a ‘center for excellence’ in brain tumor care and treatment, but there is much work to be done and maybe you can help!  So, here goes nothing…

First, please help the hard work of our organization so that we may continue to enable the doctors and researchers to advance treatment methods.  Brain surgery is certainly not fun and takes months, if not years, to fully recover, so we want to see the day that surgery can be less invasive and to continually improve the standard of care for brain tumor patients.

Next, we need more clues and positive results to understand the drivers and causes of a brain tumor.  Help us to understand the underlying cause of a brain tumor so that the doctors and surgeons could take proactive measures to treat this disease.  Completion of this will help bring us my third wish, the cure!

Fourth, please bring those who are suffering comfort and support.  Whether they are recently diagnosed; a brain tumor warrior; a caregiver; or a parent, friend or family member of someone who is battling this diagnosis or coping with the insurmountable loss, everyone needs additional help and hope.  We pride ourselves on doing the best we can do provide hope and support, but our reach only goes so far and additional resources are needed.

Finally, the brain tumor community could use more joy and laughter.  This is a difficult diagnosis to cope with, but hope, laughter and joy are the best medicine.

I know this is a lot, and you might not be able to help with everything this year, but it would mean the world to all of us in the brain tumor community if you could help in any way possible.  I’d appreciate it!

Thanks,
Chris

p.s. I’ll leave cookies and milk!
p.p.s. Don’t forget gifts for Ashley and Coddington!

Oh, and it’s Time to Lend a Hand to Life, the Greatest Gift of All

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There are not many instances where you would say a hospital visit is pleasant or joyous, but our annual check presentation from the Cusano Family Brain Tumor Fund to the Yale Brain Tumor Center stands as one of the few exceptions.

Along with Ashley and my parents, we went back to the place that is all too familiar for all of us.   Walking through those doors, I’d be lying if I said a myriad of thoughts wasn’t running through my head.  Ten years ago, I thought I was never going to go home from the hospital.  Monday was different though.  I could not run into the building fast enough as I was beaming with excitement and pride over what my family, friends, community partners and new acquaintances have done, and will continue to champion.

Thanks to all of you for your support this year, we presented a check for $40,904.00!As a third party fundraiser for the Yale School of Medicine, I am proud, and speaking for my family, I know they are too.  Because of you, our friends and supporters, there is hope for brain tumor research and for patients.  Because of your participation and support, the doctors and researchers were enabled to take their research on central neurocytoma far enough to apply for federal funding from the National Institutes of Health (more on this coming soon).  The community has rallied and shown that a brain tumor messed with the wrong person (and family), and I am forever grateful for each and every one of you.

Together, since 2014, this gift fund has raised over $198,000 for The Cusano Family Brain Tumor Fund that is being used toward brain tumor research at Yale.  We have also forged relationships and friendships that will last a lifetime – countless partners, supporters and fellow brain tumor warriors that I have met along this journey.  Additionally, because of this event, I have friendship with Ed Jr. and the crew at Stony Creek Brewery and hope to have a collaborative effort on a charity beer that was sampled and brewed by Stephen and I.  We have also brought awareness to brain tumors and as my dear friend Tracey would say, we are making this journey a little less scary for the next person who is diagnosed.  But above all, we have developed a friendship with the doctors, nurses, researchers and development officers at Yale.  Each time I see them, I always begin by reminding them of my gratitude for saving my life and enabling me to sit here and write this entry.  I am hopeful and confident that together, we can and will make this diagnosis a little less scary.

With all of the good synergy and willingness to collaborate among the doctors, researchers and nonprofits such as the Connecticut Brain Tumor Alliance, better treatments will continue to develop until ultimately, the cure will be discovered.

I am speaking only from what I can see and what I believe, but I trust we are on the precipice of a breakthrough.  Sooner rather than later, the brain tumor community will have its “ah-ha!” moment.  Until then, our work must go on and we will continue to say thank you in the only way we know how.

Cheers!

Did You Ever Know That You’re My Hero

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The brain tumor community lost one its greatest advocates and the fiercest warrior I have ever met, and perhaps will ever know, this past Friday.

Tracey Gamer-Fanning-Shimer, a co-founding member of the Connecticut Brain Tumor Alliance and its first Board president, passed away after her courageous battle with brain cancer.

Diagnosed in 2006 and given three-to-five years to live, she inspired many and touched countless lives, including mine.  I first reached out to the CTBTA in 2013, five years after being diagnosed and in need of an outlet for support and comfort.  The organization welcomed and embraced me with open arms, but Tracey and I had a special bond that I will cherish forever.

I know I am not alone in this, but she taught me the meaning of perseverance, love and how to truly enjoy life.  She was the most selfless and inspirational person I have ever met.  Never once did she complain or feel sorry for herself.  Always smiling and having a good time, she would come out and say something that made you do a double-take, but this was the Tracey that we knew and loved.

Yet, aside from how great of an individual she was, she also changed lives and made a profound impact on the brain tumor community, especially here in Connecticut.   The one thing about Tracey – she always, always put her friends and the brain tumor patients before her.  She allowed us to have a voice and spill our emotions.  Even when I knew she was not feeling her best, she would attend a Gray Ribbon Club meeting so that she can provide comfort and hope to someone battling.  She would often remind me – we are paying it forward.  That sort of compassion and love is not something you see everyday.

So Tracey, thank you for changing my life and the impact you made on me.  I admire you and everything that you did.  I will hang tight to the memories we shared and I promise to continue your fight.  It was an honor and my privilege to work alongside you in this mission and I promise to make you proud.

Rest in peace, my dear friend and I will see you again.

We’re All In This Together

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Ahhh, September is finally here!  And that means Brainstormin‘ is literally just around the corner.  My family, friends and I are hard at work, getting last minute details squared away and ensuring that Friday night will be one to remember.  To those who have their tickets, I look forward to seeing you there.  For everyone else, you can purchase them at the door!

I’ve been posting a lot on social media and sending emails blasts with the various updates, but here’s everything you need to know:

Friday, September 14th at 6:30 at Stony Creek Brewery.  We have sponsors; we have iHeart Radio’s Renee DiNino as emcee and Ann Nyberg of WTNH as our special honorary guest; we have the cover band Heat; the Carla’s Pasta truck will be on site; we will have a commemorative toast with beer brewed by Stephen and I; raffle and auction items that you won’t want to miss; but most importantly, updates on the central neurocytoma study that your funds have supported by surgeons at the Yale Brain Tumor Center.

In the five years that we have done this, there has been one constant and that is the support of our family, friends, coworkers, survivors, warriors and caregivers alike, as well as new faces from around the community.  Without your never-ending generosity, this would not be possible.

Because of you, I have hope.  Because of you, brain tumor patients and their families have hope.  Because of you, better treatments are being found and we are inching closer to the cure.

As a ten-year survivor, there is nothing more that I could have asked for when I was diagnosed.  At the outset, I was afraid, albeit confident.  I fought hard to regain all that I lost.  When I finally returned to my old self and came through this adversity, I knew I wanted to make things better for the doctors and patients fighting this disease.  Because of you, I found it within myself to want to champion this cause and give back.

On Friday night, come out and be prepared to have fun.  Open your hearts and your wallets and help to find the cure.  Yankees and Red Sox fans, there’s something for you; if you’re a fan of the Giants, come on out; Elton John fans! food lovers!  You get the hint – we have awesome prizes.  And someone will ride home on this, thanks to my brother-in-law and owner of Al Mac Motors who has donated a scooter every year this fundraiser has been held.

A brain tumor diagnosis is not something that anyone wants to hear.  It is not a ‘sexy’ disease and is underfunded in terms of research dollars.  But you will be helping to change that that, and I am eternally grateful.  The seeds were planted five years ago: