Uncle Jack I also will miss you so much.

Jack's service to the rare disease community extended beyond his incredible leadership with LGDA. He also served as the Secretary for the FD/MAS Alliance which supports those living with fibrous dysplasia, McCune-Albright syndrome (FD/MAS). Jack's steady and strategic thinking helped our community weather some difficult transitions and find firm footing. It was always clear that his heart was with LGDA and his daughter's legacy, still his perspective brought valuable support to a fellow rare community. We are very sad to hear of his passing and extend our deep sympathy to his friends and family. 

I worked with Jack at Encore in the early days. Jack was a kind gentleman with the listening ear. My condolences to you and we will all miss Jack.

I was so saddened to hear of Jack's passing.

 I will never forget when Jack answered my call twelve years ago after learning about the LGDA. He was the first person who helped me and my late husband, Edward, to have a better understanding of Gorham disease and he connected us with the medical community around the world.

After the passing of my husband, working with Jack in different projects, particularly with La Paz Children's Hospital under the direction of Dr Lopez, brought much needed joy and meaning into my life.

His support to me and my daughter Ines was instrumental in rebuilding our lives after the loss of a loved one, a sentiment that we sadly shared with Jack.

His kindness and dedication despite all the challenges and difficulties in his own life have helped many patients and their families.

It was a great privilege to become his friend. I will really miss our telephone conversations.

He will be forever in our hearts.

He is now with Jana and Megan.

My deepest condolences go to his loved ones.

God bless,

Nuria and Ines

Carol, I was truly saddened to learn of Jack’s passing. Just yesterday.

I always had great admiration for Jack and much appreciated the occasional email exchange with him regarding matters of politics, religion or simply commenting on the observation of how uncommon it was that we would find common sense prevailing in this seemingly upside down world.

I will always cherish the memories I have of times we spent working and traveling together over the years while working at Encore and Sun.

My heartfelt prayers and condolences go out to you and the Kelly family for your loss.

Jack was a man of principle, unshakeable character and faith. I was blessed to be able to call him my dear friend.

God bless you all,

Joe Heaney

There was never a more kind and selfless man than Jack.  I knew Jana before I knew Jack.  She was the most extraordinary compassionate individual seeking to help others facing challenges similar to those she faced so bravely.  When I soon got to know Jack, it was clear that the apple didn't fall far from the tree.  Jack carried on what Jana began and took the initiative to provide compassion and information to individuals and families with complex lymphatic anomalies even further, stimulating collaborative research to help accelerate the world's knowledge of these unstudied conditions.  We will miss Jack, but like Jana, their legacy lives on.  They will always have a special place in the hearts of all of us at the Vascular Anomalies Center at Boston Children's Hospital.

Jack and I worked together for many years in Fort Lauderdale and I considered him a good friend. I retired and moved, so we lost contact in the past several years, but I am saddened to learn of his passing. He was a good man and devoted father and he will be missed. My sincere condolences to his family.

My condolences to Jack’s family. I don’t know what I would’ve done without Jack when I was first diagnosed with gorhams 16 years ago. He took my calls whenever I had to talk to someone. Thank you JackRest in peace, buddy.

Dear Jack

It has been almost 20 years since I met you in your tireless fight to help patients with Gorham's disease and since then you have represented for me an exemplary father, unbeatable in the face of all of life's setbacks, who loses his wife and two daughters, and still finds time to help others to the point of exhaustion. Your legacy remains indelible in the Vascular Anomalies Center at La Paz Children's Hospital in Madrid, Spain, and I can say without a doubt that patients with complex lymphatic malformations in this country and in Europe have a better quality of life thanks to you and Tiffany. You deserve all the happiness of being reunited with Jana and Megan. We will always remember you.

Juan Carlos

Jack was a kind and gentle soul.   I met him at Encore/Sun and had the pleasure of working with him and have stayed in touch over the years.   He will be missed but I'm sure he is happy to be with his two daughters and share in all they accomplished.     Condolences to Carol and his entire family.  

Jack was our leader and so much more! Like him, I lost a daughter to one of these horrible anomalies. So, when he asked, I gave.

Our 'family' will miss him!

I was so sorry to hear about jack’s passing.  He left a great legacy for his daughter and all of those like her who found hope, help and support in living with rare disease.

Rita Ferry

The Lymphangiomatosis & Gorham’s Disease Alliance (LGDA) extends our deepest condolences to Jack’s family and loved ones. Jack’s leadership, compassion, and unwavering commitment to LGDA shaped our organization and strengthened the community it serves. His legacy will live on through the mission he so faithfully carried forward and the countless lives he touched.