An Open Letter From A Newbie To The Hemophilia & Bleeding Disorders Community

As December has quickly come and gone, I reflect on all the blessings 2015 has brought. For the majority of us December means the holidays and is a time for celebration. For me, it is also a time of reflection and gratitude. This year, I am truly blessed and grateful to have been given the opportunity to work with and learn so much from The Tennessee Hemophilia and Bleeding Disorders Foundation, the families and children affected by hemophilia and bleeding disorders, and their supporters. 

In truth, before this year hemophilia was a fairly foreign concept and disorder to me that I knew little about. Today, after having had the pleasure of working with this community, and more specifically having visited Camp Freedom and participating in other events and activities with THBDF, I have witnessed and experienced genuine compassion, the power of philanthropy, and true comradery. I am reminded of how important and extraordinary it is to be a part of an active hemophilia chapter. It is this community of supporters and foundation that has taught me most.

To the Tennessee Hemophilia and Bleeding Disorders Foundation, their supporters, friends, families, and the volunteers who put in their time and hard work, share their compassion, and support the hemophilia and bleeding disorders community – you are the true unsung heroes and I am grateful for all that you do. Thank you for showing me the importance of giving back and making a difference, no matter how large or small.

So as we wrap up an eventful 2015, I encourage you to reflect on your blessings and express your gratitude to those who inspire and encourage you most, as THBDF has for me. This world needs more love, compassion, encouragement, prayers, and hope. I hope and pray that 2016 brings each of you health, happiness, and great success; that you may have access to treatment, and that you too feel the comforts and strength from a community like the Tennessee Hemophilia and Bleeding Disorders Foundation. Happy holidays, and cheers to a New Year! 

 

Sincerly,

Alisa 

 

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Save The Date: #GivingTuesday December 1, 2015

Where has 2015 gone?! We only have a few more months left, and 2016 is just around the corner.  As we prepare for the holiday season we’re wrapped up in parties, shopping, cooking, and entertaining to name a few. As Thanksgiving is right around the corner, we are reminded to give thanks for all of our blessings. On behalf of the Tennessee Hemophilia and Bleeding Disorders Foundation, we want to say thank you, from the bottom of our hearts. It’s because of you, our donors, fans, families, and friends that have made this year possible and such a success.

Now, fast forward to the day after thanksgiving, we are bombarded with fantastic deals during Black Friday and Cyber Monday, but there doesn’t seem to be much giving going on in the days after Thanksgiving. That makes 1 day for giving thanks, and two for getting deals.

Four years ago, in response to this lack of philanthropy and charity, 92nd Street Y, a cultural organization in New York City, began the first #GivingTuesday campaign. Observed on the Tuesday following Thanksgiving #GivingTuesday connects diverse groups of individuals, communities and organizations around the world for one common purpose: to celebrate and encourage giving. Since then, the movement has become a huge event that sparks charitable giving patterns and encourages individuals to think of others during the holiday season. Save the date GivingTuesday

Let’s join hands and celebrate giving and thinking of others during this holiday season! Here’s what we can do, together:

1. Donate Here:

Instead of giving materialistic gifts that will lose its lust in a week, give the gift of giving. Donate to a charity in someone's name. For Christmas last year I donated #30 to 5 different charities; my gift to my family was a donation to the charity of their choice in their name. 

2. Participate in #MyGivingStory

It's easy! Share your giving story! What inspires you to give? Tell a story of a time you supported a nonprofit organization in a way that was meaningful to you. Include which organization you gave to and why. By sharing your story, you could win up to $5,000 for your favorite nonprofit organization (and yes, a globalgiving giftcard for you too).

*Submit your story here

We invite you to join us as we celebrate #GivingTuesday this December 1,2015 as we come together to be a part of a global celebration of a new tradition of generosity! Find a way for your family, your community, your company or organization to come together to give something more, and to celebrate the true meaning and spirit of the holidays.

 

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The 2015 Royal Gala; Come Support THBD With A Night Of Food, Fun, Music And More!

2015 Royal Gala Invitation

It's that time of year again and we're gearing up and getting ready for the 2015 THBDF Royal Gala. We'd like to take this opportunity to invite all of our friends, family, supports, and the community at large to come celebrate and participate in our SIXTEENTH Annual Royal Gala. Ladies, pull out your cocktail dresses, and men suit-up in your Sunday Best, boots optional.

Please mark your calendars for October 9, 2015 at the Loveless Barn. 

Cocktail Reception will begin at 6:30 p.m.

Dinner, Silent & Live Auctions, and Dancing to follow.

Click here to RSVP for the 2015 Royal Gala. If you are unable to attend we encourage and kindly ask you to consider donating. Not sure what to expect? Take a look back at last years event here.  Also see below the guest blog post written by our wonderful and tallented photographer, Rachelle Morvant.

 

Photograph Nashville Was Honored To Provide Event Photography For The 2014 Royal Gala Fundraiser For THBDF

 

 

Loveless Barn was again the beautiful backdrop to the Fifteenth Annual Tennessee Hemophilia and Bleeding Disorders Foundation’s Royal Gala. On Friday, September 5th, many caring sponsors donated their time, products and money to benefit THBDF and their efforts.

The Royal Gala began in 2000 through the dedication of Catherine van Eys. The title for the gala came from the prevalence of hemophilia in Russian, Spanish and Prussian Royalty. This begot the once-used term “the royal disease.” Hence, the Royal Gala was started to raise funds so that the THBDF may continue to promote research, education and awareness of hemophilia and other bleeding disorders.

Big Band music set the atmosphere for both a silent and live auction including incredible treasures and much wine. Seriously, there was a lot of wine. But who doesn’t enjoy a good wine? So, auctioning off wine for a great cause is a wine-win! (See what I did there?)

The Big Stick, a sacred symbol of freedom for children with hemophilia, was auctioned off to raise money for Camp Freedom. The Royal Jewels, a 3-stone, 1/2 Carat Diamond Necklace, were auctioned as a finale. 

This event also acknowledged the Victoria’s Cup Award recipient for, “distinguished service and support” to the THBDF. This year’s honoree is Ms. Mavis Harrop. The trials and difficulties families face when a loved one has hemophilia are numerous and affect all aspects of life. I lost my cousin to HIV from a tainted blood transfusion back when so little was known about living with hemophilia.

Even today, as illustrated by a very personal story shared on stage by Suzie Harlan, some of the top hospitals still struggle with identifying and treating this rare but potentially deadly disorder.

It’s thanks to the efforts of foundations like THBDF that children and adults can live a more normal life under better medical knowledge and patient education.

39th Anniversary of Camp Freedom: Fun, Friends, and "The Squirrely"

Another year of Camp Freedom has come and gone. Heavy-eyed campers and counselors head home with unforgettable memories, friends, skills, and the tune of “Squirrely” buzzing through their heads. This year marks the 39th anniversary of Camp Freedom, and I am humbled by such an amazing group of individuals.

 

For the past week 68 campers and 40 staff members affected by hemophilia and/or a bleeding disorder, partake in the freedom of camp activities and bonding with a community that understands the day-to-day struggles of living with a bleeding disorder. But don’t let this fool you. Upon visiting Camp Freedom for the first time, I see campers canoeing, swimming, playing music, learning archery, overcoming fears of the ropes course, playing basketball, tie-dying, laughing, dancing and singing. I was taken back to my own memories of camp and understood just how precious and important this week of the year is for these campers.

 

My visit starts with a stop at the pool, a group of girls are laughing and playing Marco-Polo. Aquatics Director, Jeff, explains to us the swimming test every camper must pass at the beginning of the week and the games and competitions campers enjoy most. Before long the girls are summoned out of the pool as it was time for their next activity; but before they go, they must demonstrate “The Squirrely.” They enthusiastically sing in harmony and show us their dancing skills as they shake their behind like a squirrel! And perform “The Squirrely” song. “The Squirrely” is used as a silly form of discipline the campers must perform if they forget their name tags, don’t pick up after themselves, etc. I think the counselors do this for some entertainment, and the campers seem just as entertained!

 

We move on to music class, where a group of boys are banging on buckets and exploring new and fun ways of expressing themselves. After an interactive set of drumming and tunes, we move on to the Ted E Bear clinic. A group of young girls are dressed up as doctors and are stuffing and personifying their own teddy bears. Young camper, Lola, introduces me to her floral patterned bear, Bloom, and tells me all about her sassy personality. As they stuff the bears, they learn of different genes and make the bears their own. Even cooler, campers are able to go home and teach their parents, family and friends all about hemophilia and their condition.

 

Moving on to lunch, we are entertained by lip-syncing contests and the opportunity to mix and mingle with campers and counselors. I sit next to a former camper now well into adulthood with children of his own. He has come back to visit with old friends and former campers, now counselors themselves. He tells me about how important Camp Freedom was to his childhood; how it gave him the opportunity to be a “normal kid”. Bullied at a young age for being different and living with hemophilia, Camp Freedom meant he could interact with kids coping with similar experiences and quickly became an outlet for support and exploration.

 

After lunch it’s time to visit the infirmary. Young camper, Will, is happy to demonstrate how he is able to stick himself and inject himself with factor, the expensive medication that can cost thousands per dose. As part of camper’s daily itinerary, they spend an hour a day in the infirmary learning how to safely self-administer their medications, cheering on others, and offering one another support. Once a camper is able to stick themselves for the first time, they receive the “Big Stick Award” a highly coveted award that represents overcoming the obstacles of hemophilia and reclaiming their freedom.

 

Camp Freedom is much more than a summer camp where kids escape for fun and games. Camp Freedom is a place that brings together a larger community of brothers and sisters who share a common bond, work on teambuilding, and self-esteem. It’s a place where those living with hemophilia or a bleeding disorder are not defined or confined to their disorders. And thanks to the staff and supporters who helped fund and participate in camp, you made it possible. After this years visit to Camp Freedom, I look forward to year 40 and am hopeful to attend as a counselor myself. I am so proud of this community for their courage, determination, and ability.

 

Please help spread the word by sharing this post with your friends and family and let them know about your experience with Camp Freedom and what it means to you. Together, we can enhance the lives of those affected by hemophilia and bleeding disorders; let’s make next year one for the books.

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Pitchin' for Caleb returns to Contennial Park Aug. 15

The 9th annual Pitchin' for Caleb tournament is returning to Centennial Park Aug. 15. The tournament is taking a new turn this year, with a cornhole tournament in place of the horseshoe pitching contest. 

The tournament supports the Tennessee Hemophilia and Bleeding Disorders Foundation, which provides services for families dealing with the diagnosis of a bleeding disorder with summer camps for children 7 to 15 years old, educational programs and emergency financial aid. It's named in honor of Caleb Wood, the 12-year-old son of Shane and Kelley Wood of Crossville. Caleb was diagnosed with Von Willebrands, a bleeding disorder, just before his first birthday in 2004 after a fall from his grandmother's bed left him with a huge hematoma on his forehead. 

Later, after seeking medical advice at the Cleveland Clinic, the Wood family learned Caleb may have a connective tissue disorder called Ehler's Danlos. 

"By a stroke of luck, I just happened to be reading a magazine called Hemaware one day and came across the bio of a young girl in Wisconsin diagnosed with Von Willebrand and Ehlers Danlos. I couldn't believe it," said Kelley. 

She reached out to the child's mother and learned which doctor the girl was seeing. In September 2006, the Woods traveled to Children's of Minnesota to see Dr. Margaret Heisel-Kurth, and they continue to return for visits every two years. 

The family is asking for the community's support of the tournament, both as players and for contributions to make it a success. They need gift cards or certificates providing services, items for drawings and monetary donations and event tickets. All funds from the event go to the Tennessee Hemophilia and Bleeding Disorders Foundation. Receipts for tax purposes will be available. 

In the past six years, the tournament has raised $65,000 for THBDF. 

Check-in, practice and draw for partners begins at 9 a.m., with the tournament getting under way at 10 a.m. Lunch by Ronnie and Scotty Webb will be at noon. Entry fee is $20 per person and includes lunch and a T-shirt. Payment is at check-in. 

For more information, contact Kelley or Shane Wood at This email address is being protected from spambots. You need JavaScript enabled to view it.  or (931) 261-4446.

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