Friday, February 14, 2014

The Holden Flynn Fund Update




We've had the fund open for a little over a month, and it is with great privilege to say that we've surpassed our start-up goal of $10,000. That means, in the coming weeks, we can begin laying the groundwork for the foundation. It will take some time, as there is a lot of legal-based hoops to jump through, but you'll know when we're ready.

Thank you to everyone who has donated. You're not only donating in Holden's name, but you're helping carry on his legacy while assisting other CHD families. You can believe us when we say. our heart is going to be poured into this foundation.

We are STILL accepting donations. All that great information is available under The Holden Flynn Fund tab. Please feel free to pass it along.

Finally, please keep your ear to the ground. We are going to be hosting a small "happy hour type" fundraising event in the coming weeks. Details are being hammered out now.

As always, if anyone has and fundraising ideas, or just wants to help in some way, please et us know.

Thank you!

Trey and Nicole Flynn

PS - WAGON HO!

Thursday, February 13, 2014

The Work of Fabio Napoleoni

Our friend Mick introduced us to the work of Fabio Napoleoni last weekend. He is an amazing artist, who is also the parent of a CHD child. He has put a lot of that experience into his work.

Take a minute and listen to his story, and then marvel at his work.



Website: http://www.fabionapoleoni.com/

Monday, February 10, 2014

#RedForHolden

Last Friday you all came together and sported your finest reds for CHD Awareness. Check out the slideshow. (And if you have one for us, send it our way) #RedForHolden #CHDAware


The Holden Flynn Fund: February 7, 2014





On October 11, 2011, our son, Holden Joseph Flynn, was born with a complex congenital heart defect (CHD). By his 14th month of life, he needed 4 operations to repair his distressed and broken heart. Simply put, he went through more medically, than most of us will need in our lifetime. 

As parents we were there for every procedure. Every hospital stay. Every needle. Every drug. We watched him fight, and we watched his caregivers fight for him.  

On January 5, 2014, while awaiting a heart transplant, he lost his battle with CHD.
Holden certainly isn’t the first child who has been through this. We’ve met so many families that come armed with similar stories of the amazing CHD battles they’ve watched their children fight through. Many end with victories, while others pass fighting an honorable battle until the end. There is one common theme though, a strong family, banding together to help their child in need.

Over the last two and half years we’ve been blessed to share Holden’s story as he carried on his day to day fight. His hospital featured him in a film, “The Tin Man”, that not only won national awards but opened avenues that allowed him to be an advocate for all CHD children. 

When learning of his defect we made a commitment to educating ourselves and teaching others about all aspects of congenital heart defects. We always said that once Holden was stable, we would do even more for the CHD community. With his passing, our goal remains the same. 

It is time for CHD to step out of the shadows and into the public consciousness. It is the number one birth defect in the world, affecting about 1 in 110 children. Not a day goes by where we don’t feel the masses need to know more about these noteworthy victories and the hard fought losses. And while survival rates have increased over the last few decades, that doesn’t change the fact that it still has a long way to go. CHD lags behind most childhood diseases in both awareness and funding.

We created the Holden Flynn Fund on January 8, 2014 to help us build a foundation that will continue Holden’s fight in spirit. As we approach American Heart Month and CHD Awareness Week we write asking you to help us achieve this goal. We’re committed to creating a foundation that would not only make Holden proud, but allow us to continue to leave The Tin Man's mark on this world.  

Over time we will do everything from assisting displaced heart families, to fundraising for research, and raising awareness at the highest levels. For two and a half years we dedicated our lives to caring for our son. For the remainder, we are dedicating our lives to helping the world to better understand such a crippling and unknown disease.

CHD might have taken our son’s life, but that does not mean it has to take the life of another child.

Please join us in making this foundation a reality and thank you for your support.

Sincerely,

Trey and Nicole Flynn
Parents of Holden “The Tin Man” Flynn
www.TinManFlynn.com

Donations to Holden's fund can be made payable to "Schwab Charitable Fund for the benefit of the Holden Flynn Fund" and should be sent to:
David Vaughan Investments, Inc.
Attn: Amy Cowen
5823 N. Forest Park Drive, Peoria, IL 61614

OR ONLINE (Please understand that the donations added via Fundly will be later wired to the Schwab Charitable Account. Tax deduction letters will come through Fundly and NOT Schwab) For LARGER donations you are encouraged to directly send a check or money order.

All donations are tax deductible.

Sunday, February 9, 2014

Opening CHD Awareness Week with a Bang


 
It was cold, dreary, rainy, and wet, but we couldn't have asked for a better day.

First place. Thank you to all who helped us make this possible. Pictures below.

#CHDAware

Wednesday, February 5, 2014

CHD Awareness Week 2014

As continue to build a charitable foundation to carry on Holden's fight, we step into American Heart Month and Congenital Heart Defect Awareness Week (February 7-14th). These are some of the biggest days of the year for CHD families. I know we've listed some events on social media, but I thought it might be a little less scatterbrain to put it all on one blog page.

All Week - The Holden Flynn Fund: We have started off with an absolute bang, but still aren't where we need to be to comfortably meet the start up costs for the foundation. You can still donate (or encourage others to donate!)

Donations to Holden's fund can be made payable to "Schwab Charitable Fund for the benefit of the Holden Flynn Fund" and should be sent to:

David Vaughan Investments, Inc.
Attn: Amy Cowen
5823 N. Forest Park Drive, Peoria, IL 61614

We are working on the online donations NOW, and hope to have that up and running by FRIDAY. 


Now through February 14th NEED VALENTINE'S DAY FLOWERS? Windermere Flowers and Gifts will be donating $1 from every arrangement ordered for pickup or delivery February 13th or 14th to the Holden Flynn Fund.  You can order by calling, 407-296-9002, or by going online to www.windermereflowersandgifts.com and clicking on "order on line" in the top right corner. Tell them The Tin Man sent you!



February 7th - Wear Red for CHD Awareness! Please spread the word and tell people WHY or WHO you are wearing red for. Send us your pictures! Be crazy! We want to see them. And use the hashtag #CHDAware #RedforHolden (or whoever you're wearing red for)





February 8th - The Orlando Chili Cookoff - Join us with Mended Little Hearts of Orlando at Festival Park by the executive airport. We'll be wearing our red, and spreading CHD Awareness via the power of chili.

Tickets can be purchased at this link!

We have a large spot located with our backs to Primose Drive. We're also conveniently within shouting range of the Pepto Bismol distribution tent and the Port-o-Johns.





February 15th - Orlando Solar Bears Game: We'll be at the Orlando Solar Bears game for American Heart Association night. Tickets are only $15 and a portion of the proceeds goes to Mended Little Hearts of Orlando Heartwalk team. Holden was part Canadian anyway :-).

Tickets for Mended Little Hearts can be purchased here.
Password: HEART



Any other ideas or plans? Let us know. We're open for anything to spread the word.