Agapi&Hope

SECOND ANNUAL  GALA

HHT Logo White

{Corporate Love}

logoembassy 4601285516_257x129 4601291058_377x91 467214970a420a5cf6089a557d24a0a9 SWA_FromtheHeart_4C sponsor - briegan 919-logo-2013 Walter-Logo-taupegrey 39073_137413049627080_1065264_n 61348_142138615831027_5340777_n 67057_157027747664753_1924323_n ccc (2) 01_ambry_logo 91821320e26ffef435ea9ff9fe2657ad CureHHT

WhattheHHT?

{Updating as questions come our way! }

 

Q: What is the direct link to where we can purchase tickets?

And can we just donate if we cannot attend that day?

 

A: The direct 'friendly URL' is: https://hht.ejoinme.org/theagapiandhopegalaregistration and individual tickets are found near the bottom when you are on that page. Please remember that due to the nature of a formal seated dinner, the last day to get tickets will be August 1st.

 

All online registration and donations can be done through this secure Greater Giving platform.

 

[NOTE: tickets are not sold elsewhere online, notTicketLeap or Facebook events]!

 

 

 

 

Q: We have seen a black-and-white square throughout your flyers and materials in the community: Why? What is it?

 

A: In an effort to build awareness and interest in our launch year, a QR code (known as a "quick scan" code) allows smart phone users with scanner apps to simply scan our specific matrix/2D barcode which instantly directs them to our moble website! Realizing many people want their information on-the-go and on their time, it's another outreach platform we are utilizing in hopes that it helps spark interest in not only our site, but our social media and educational forums too!

 

Try it here:

You can also store in on your smart phone for future use (for example, navigation to the venue or viewing our videos with friends)!

 

 

 

 

Q: Can we get apparel that we can sport around town to show our support and help you promote awareness? ... Tees, hats, decals?

 

A: Yes... and there will be more!

 

Please click the small grey shopping cart icon at the bottom right of the page to be directed to the HHT Foundation's Online Store. There are several item options.

 

This month there is a campaign where they are sending bracelets and the new "Learn About HTT" brochure to those who contribute $25 or more. Official awareness bracelets that support the Foundation's mission and values can be seen in the video below. It is the first of many promotional short films coming soon! If you are interested, you can access the link in the video description, click the large pink heart icon at the bottom right of this page, or by contacting the sweet staff at hht.org.

 

We are pretty pumped to announce that we also plan to have Ofiicial Agapi & Hope Gala gear coming! We will update all just the second after we have the cool, attractive, high-end tops, sweatshirts, notepads and much, much more in our overly excited hands... and maybe even expect a little something super soft and impressive in swoon-worthy gift bags headed your way in February!

scan code - theagapiandhopegala.org

Q: Can we invite friends and colleagues?

 

A: Absolutely Yes... The more, the merrier! That's the Maria Viniotis Philosophy.

We want this to be an event that welcomes and grows the community and we mean this-

we're ready with wide open arms!

 

 

 

 

Q: Could you post the words from the Tribute Speech video [from the 'our story' tab]?

 

A: Of course. Despina wrote this for her future children to remember their grandmother...

 

                   _____________________________________________________________

 

"This is a letter to Mom’s grandchildren. No, they aren’t here yet —and please don’t pressure

Simon or else I’ll end up with another dog—

 

But I want to pass along Mom’s legacy at this very moment, so here goes:

 

Your grandmother was very sick. She tried her best to make it to Christmas. Decorating the house was her favorite because it made other people happy. We spent about a month in the hospital and she fought hard. Superhero strength even, but she had to leave her weak body.

 

Before she went to rest I want you to know the power she had as a Mother. We took away the tubes, the probes, the medications, everything. Even the hospital gown was changed to her favorite nightgown that smelled just like a Mom should. She breathed on her own for five hours after and in those five hours she let us wrap her arms around us and lay with her:

 

I went first. I stayed until I felt I had enough time. Aunt Eleonora went second and took her time too. Then went Aunt Natalie- her baby. As she took her last breath she was so incredibly peaceful. She was, as she had always wanted, surrounded by family. The very thing she most proudly made.

 

After, my first fear was your grandfather being alone. That was his person. One day you will understand.

 

A day later on the phone my uncle, his former college roommate, said '“Your dad always said “First is the university. Sternly. “But above that is Maria”.'  

 

My second was that you would not get to see so much of where you will come from...

So let me tell you about her now. This is what I miss so much; what she would have most wanted to pass along to you...

 

Her favorite material possession in countless possessions was a family photograph. In all the things she earned, received as a gift or splurged on her favorite item was something that just took a little time from family. May you remember that on birthdays, Christmases, and all days really. I think Moms will take any day you’ll let them.

 

Be what you seek to be filled. If it's to be a doctor, like Dr. Patterson who called Mom a friend above all, or any one of Mom's excellent team of doctors, I pray your family knows limitless people are grateful for you sharing them. If it's to be a nurse, like Brooke or Olivia, or any of Mom’s great CICU nurses, who fight by their patient's side, may you know you are doing God’s work. If it's to be the best of the best in housekeeping like Miguel, who made sure to bring tissues with a comforting look of sympathy, I hope you know you are vital to the process. Whatever you choose to be, make their kind of impact. Set a positive ripple effect into motion.

 

When it comes to relationships she would have said listen with your eyes, not ears, to who people show you they are. That what a person does around others is key. And if the first 24 years of my life are any indication, that no one will ever be good enough since it will be hard to find someone as pure, honest, caring and giving as your grandfather is.

 

Never visit anyone or attend any occasion without at least a card offering hope, celebration or understanding.

 

Often it is small things that add up to one big illustration of character.

 

That flossing has no alternative. Parties are a necessity. And her standard was that you should only serve food and wine what you yourself would eat or drink.  

 

Having a full schedule is the best, but not if it is caused by procrastination.  

 

Sometimes it takes a really good fall to know just how you stand.

 

Don't be beautiful wrapping that only leads to an empty box… It's better to be pleasantly surprised than unpleasantly expected.

 

Never go to bed mad. Wrinkles set in more that way and you won’t give the morning the opportunity to allow yourself to be truly born again.

 

Be kind to animals. Ella, her dog, longingly looks around the house for Mom to get home. They represent loyalty and listen without judgement or interruption.

 

Mom and I loved Dave Matthews-- well Mom loved Dave Matthews because her girls did-- and it wouldn't be a tribute to her with quoting the man at least once... So here goes, as he pretty much sums up what she would have preached: "The future is no place to place your better days"... Trust me, the days will keep coming. It's up to you to actually live them. I just pray you are wise and listen.

 

And as certain as I am that this isn’t fair, and although it was painful, terrible, horrible, all sorts of awfully bad, I have taken more out of the experience than it has taken out of me. Sometimes there are cracks just to let light in and remember there is always some beauty in the breakdown.

 

Your dad-- my brilliant, rock of a husband-- said something that was profound. Typical of your dad as you will one day find out. He said '“You know the one thing your mom wanted to do but couldn’t when she was living was always be with all of her girls at the same time… “Now she can.”' That saved my heart and I hope you one day you figure this out too.

 

And finally, while you have the terrible misfortune of not knowing her and I will likely cry the day you are born because it will have been the first disadvantage you face, know that she died a martyr. She took the painful process that found the gene. She will be the reason you or Eleonora's children don't have HHT. She will be the reason Nora and I, although faced with the same structure, will not endure the same process with the same horrible outcome. Her net will spread wide, as your grandfather and I will fight long and hard for research, awareness and to flip the supply-demand problem with organ donation.

 

So she may be absent from your lives, but actually will live in your hearts.

 

The irony is her biggest regret would have been not to have met you, but believe me when I say her biggest gratification from her life IS YOU.

 

I promise to tell her stories.

I promise you that you will find parts of her in all the most beautiful places.

 

But If there is only one thing you take away from this, let it be to love life and allow it to love you right back. That’s what your Grandmom did for 52 short-- but full-- incredible years."

 

 

Her Proud Daughter for Forever and Always,

Despina Candice

 

                    _____________________________________________________________