Menu

Top Stories

Published on Friday, May 10, 2019

Celebration of Life 2019: “Alpha-1 Derby: Betting on the cure”

Celebration of Life 2019: “Alpha-1 Derby: Betting on the cure”

On Monday, April 29th, the Alpha-1 Foundation welcomed friends, family, physicians, researchers, and industry partners to the 19th Annual Celebration of Life, the Foundation’s signature fundraising event in Miami Beach, Florida. The event is held annually to always remember to celebrate life and to raise funds for Alpha-1 Antitrypsin Deficiency (Alpha-1) research and programs.

Photo (left to right): Jeanine D'Armiento, MD, PhD, chair of the board; Fred Walsh, treasurer; Mark Brantly, MD; Miriam O'Day, president & CEO.

Guests arrived in their “derby-best” attire with colorful hats, seersucker and linen suits, and of course, bow ties. Attendees got to recreate the classic Kentucky Derby in a tropical Miami setting filled with fun, friendship, collaboration, and of course, horse racing. Guests “Bet on a Cure” while making playful bets on one of the sponsored horses with names like “We Scream for Ice Cream” and “Onna Mission”. Congratulations to Robert Sandhaus, MD, PhD, for sponsoring the winning horse, “Dot’s Delight.” The event raised $350,000!

“It is so nice to gather with so many good friends of the Alpha-1 Foundation at this beautiful venue for our Annual Celebration of Life, The Alpha-1 Derby. I would like to thank all attendees for their commitment towards the Foundation and the Alpha-1 community. What a wonderful way to have fun in our hats and bow ties to support this great cause,” said Miriam O’Day, president and CEO of the Alpha-1 Foundation. Joined by Jeanine D’Armiento, chair of the board of directors of the Foundation, the program included updates and appreciation to the event presenting sponsors. 

Fred Walsh, board of directors treasurer and brother of the late John W. Walsh presented the 2019 Ron Fraser MVP Award for the Most Valuable Philanthropist to Mark Brantly, MD, for his outstanding philanthropic vision and tireless dedication to the Foundation’s mission.

“Thank you, from the bottom of my heart, to the Alpha-1 Foundation for this recognition. It was many years ago that I met a very passionate individual named John Walsh that had a rare genetic condition, a vision, and an incredible drive to move things forward. My deepest gratitude to the Foundation and the Alpha-1 community for the opportunity to serve you. I look forward to the years ahead and to finding the cure for Alpha-1,” said Brantly, followed by a standing ovation.

"My wife, Lorraine, is the Alpha. Our entire family has come a long way, from disbelief to accepting, to 'let's go out and do all we can'. It is a learning process we all go through,"  said Joe Caporaso, an Alpha-1 volunteer who attended the event with his wife and Alpha, Lorraine.

"Being at this Celebration of Life event has shown me that the fight is on-going and people are willing to help find a cure in whatever way they can. Some through research, monetary donation, or giving of their time, but the bottom line for everyone is... To find a cure," he added.

"It is truly heartwarming and encouraging, as an Alpha, to see the wonderful support first hand. I was quite touched!" said Lorraine.

"I feel empowered the more I am part of the momentum for efforts to raise funds and awareness, as with this outstanding Derby event," she concluded.

Golf Classic Winners:

  • 1st place winners: Danny Alcantara, Alex DeLeon, Bobby Cohen, Robert DeLeon
  • Longest drive winners:  Dan Beltrani  and Lorna Nemcek 
  • Closest-to-hole winners: Alex DeLeon 

The Alpha-1 Foundation would like to thank our generous presenting sponsors: AlphaNet, CSL Behring, EVERSANA, Grifols, Takeda, Ruth and Gordon Cadwgan, PhD, and Lorna and Adrian Nemcek.

The Alpha-1 Foundation is committed to finding a cure for Alpha-1 Antitrypsin Deficiency (Alpha-1) and to improving the lives of people affected by Alpha-1 worldwide.


Print

Sharp drop in portable oxygen access blamed on provider pay changes

Monday, September 10, 2018
A coalition of pulmonary health groups called on the Centers for Medicare & Medicaid Services (CMS) to change its supplemental oxygen reimbursement policy to remove liquid oxygen from competitive bidding requirements. The American Lung...
Divider

New advances in gene therapies for rare diseases

Friday, August 31, 2018
The U.S. Food and Drug Administration (FDA) recently approved Onpattro (patisiran) infusion for the treatment of peripheral nerve disease (polyneuropathy) caused by hereditary transthyretin-mediated amyloidosis (hATTR) in adult patients. This...
Divider

Alpha-1 Foundation leadership transition

Wednesday, August 22, 2018
The Alpha-1 Foundation Board of Directors is pleased to announce that Miriam O’Day has been named as interim CEO of the Alpha-1 Foundation. Ms. O’Day has served the Foundation with distinction for nearly twenty years. The Board is...
Divider

Alpha-1 Foundation earns 8th consecutive 4-star rating from Charity Navigator

Wednesday, August 22, 2018
The Alpha-1 Foundation has earned its eighth consecutive 4-star rating from Charity Navigator, an accomplishment that only select charities achieve in the U.S. The Foundation earned its top score based on Charity Navigator’s evaluation of...
Divider

Orphan Drug Designation granted to Bronchiolitis Obliterans treatment

Friday, August 17, 2018
Onspira Therapeutics announced that the U.S. Food and Drug Administration (FDA) granted Orphan Drug Designation to its investigational product, OSP-101, for the treatment of Bronchiolitis Obliterans (BO). BO is a progressive inflammatory condition...
Divider

Family of liver donor meets transplant recipient

Friday, August 10, 2018
On June 19, Cletus Schnieders was eating dinner with his wife Carrie and their three children (sons Trenton, 9, and Cletie, 4, and daughter Samantha, 2) in their Cincinnati home when he started to choke. Photo: Facebook/Carrie...
Divider

Living donor saved her own son’s life

Tuesday, July 31, 2018
Dara Kass is an emergency physician in New York, but she did not need to be a doctor to know that something was going on with the third child, Sammy. At birth, the baby was smaller than his two siblings. He barely grew and was lethargic; his skin...
Divider

The Assistance Fund opens new program for Alphas

Monday, July 30, 2018
The Assistance Fund, an independent charitable patient assistance foundation that helps patients and families facing high medical out-of-pocket costs, announced the launch of a new program for individuals with Alpha-1 Antitrypsin Deficiency...
Divider

Alpha-1 Foundation board has new Chair

Friday, July 27, 2018
The Alpha-1 Foundation has the honor to announce that Jeanine D’Armiento, MD, PhD, has been named as the newest Chair of its board of directors. D’Armiento has served on the Foundation’s board since 2011, and before that, she had...
Divider

FDA warns of imposters sending consumers fake warning letters

Thursday, July 19, 2018
The U.S. Food and Drug Administration (FDA) is warning consumers about criminals forging FDA warning letters to target individuals who tried to purchase medicines online or over the phone. Based on the agency’s experience with criminals...
Divider

Inhaled alpha-1 antitrypsin: Kamada receives positive advice on new Phase 3 study design

Tuesday, July 17, 2018
Kamada Ltd., a plasma-derived protein therapeutics company, announced that it has received positive scientific advice from the Committee for Medicinal Products for Human Use (CHMP) of the European Medicines Agency (EMA), related to the development...
Divider

FDA announces recall of several medicines containing valsartan

Monday, July 16, 2018
The U.S. Food and Drug Administration (FDA) is alerting healthcare professionals and patients of a voluntary recall of several drug products containing the active ingredient valsartan, used to treat high blood pressure and heart failure. This...
Divider
First45678910111213Last

Article Search

Enter keywords in text box and click Search button for results.

Archive