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The Breath of Life Fund is dedicated to the loving memory of Dina LaVigna, a very special person who suffered from a disease called Primary Immunodeficiency (PI). The mission of the Fund is to improve the care and comfort of patients with Primary Immunodeficiency by improving the patient experience in hospitals and provide forums for social contact between patients, families and healthcare workers.

The Jeffrey Modell Foundation supports the fund financially and administratively as the Fund's parent organization.

Fund Background

The LaVigna Family: (top row) Merritt, Gary, Brenda, Grant,
Bill (bottom row) David, Tom, Ayndrea, Dina, Zachary, Jeff

Dina LaVigna was diagnosed with PI in her early teens and was able to receive monthly gammaglobulin treatments that enabled her carry on. Though she was often weak from her many illnesses, she chose to live a very full and interesting life, living in southern California, Washington DC, and Manhattan, NY and traveling to many foreign countries for work and pleasure. She was very close to her family, which included her son Zachary.

Through the years her lung capacity diminished more and more due to her many severe illnesses, so much so that doctors eventually encouraged her to seek a double lung transplant. It was during this lung transplant in April, 1997 (when she was just 33 years old) that we lost her, however, not before she deeply touched the lives of literally hundreds of people.

When Dina passed away, her husband, Jeff Schmitt, established the Dina LaVigna Breath of Life Fund under the umbrella organization called the Jeffrey Modell Foundation. The purpose of the Breathe of Life Fund is to carry out one of Dina's greatest wishes: to make life more pleasant and improve the care and experience for PI patients.

One of Dina's expressed wishes during those last years was her desire to improve the lives of the many young children she met during her regular visits to the hospital. These children and many other PI patients spend their whole lives in and out of hospitals due to the many illnesses they contract.

Early on, Dina participated in many drug treatment studies as the medical community was struggling to develop treatment methods. Today, the intravenous gammaglobulin treatments Dina helped pioneer offer tremendous help and hope to many immune deficient patients. On average, today's PI patients receive a treatment every 3 to 4 weeks. While receiving their drug treatments, patients are tethered to an intravenous hook-up for typically 3 to 4 hours, in some cases, up to 9 hours. Often, the periodic administering of PI medications, which boost a patient's immune system, take place in a depressing and sterile environment and lasts many long hours. As difficult as this treatment is, with regular and timely drug treatments, many patients are able to live a relatively normal life with a healthier immune system.

Annual Triathlon/Relay Fundraiser

Grant and Mark at the start of the 1999 Race
In August 1999 Dina’s brother Grant and his friends Mark and Monica Spiro founded a triathlon to commemorate the anniversary of Dina’s birth, to raise money for the Breath of Life Fund and to increase awareness of PI. This first triathlon involved only two tri-athletes, Grant and Mark. Monica was the support crew. Grant and Mark swam a quarter mile in the ocean near the Ventura pier, biked 65 miles to Marina del Rey and ran 15 miles to Torrance. Grant, Mark and Monica hoped to raise several hundred dollars. This first triathlon was a huge success, which ultimately raised over $15,000. Grant, Mark and Monica were so overwhelmed with such generosity that they decided to make the triathlon an annual event.

The 2000 Race Starting Line

The Second Annual Triathlon/Relay in 2000 was bigger and even more successful than the first year’s event. This time, eight friends and family members, including Monica, joined Grant and Mark and raised over $30,000.

LaVigna Family and Supporters at 2002 Triathlon

In 2001 the Third Annual Triathlon/Relay moved to scenic Marina Park in Ventura, CA. The distances were a 1/2 mile swim, a 40k bike ride and a 10k run. This time the Triathlon/Relay was open to the public. More than 120 triathletes and relayers participated in the event. With additional support from the business community the Triathlon/Relay raised over $75,000. Our 2002 Triathlon/Relay was again held at Marina Park and was another very successful event with almost 300 racers.

The 2003 Family and Friends

Due to the success and growth of the Triathlon/Relay, the transition area was moved to a much larger venue at San Buenaventura State Beach in Ventura, California for 2003. Our 2003 Triathlon/Relay was another extremely successful event with almost 400 racers and a total raised of $120,000. As a result of the successful 2003 triathlon, we have decided to make San Buenaventura State Beach our permanent home.

Our 2004 Triathlon/Relay was another very successful event. We had our inaugural Sprint course to supplement our Olympic course. There were almost 850 registered and we raised almost $200,000." The 2005 thru 200 Triathlon/Relay were record breaking fundraisers. We sold out each year with over 900 registrants and raised nearly $200,000 each year.

Starting 2010 we will hold the annual event at Ventura Harbor to improve the course and take advantage of the beautiful Harbor area and facilities as well as incorporate some of the surrounding businesses and services to improve the overall experience for our athletes, volunteers, and their family/friends who come to enjoy the day.

Annual NYC 4 Mile Fundraiser

The New York City 2001 Race
In July 2001 Dina’s cousin Tracy created a sister event, a 4 mile run in Central Park, New York City to increase awareness of PI and raise money for the Breath of Life. We are all incredibly proud of Tracy's phenomenal efforts at transforming the Breath of Life fundraising efforts into a truely coast-to-coast cause!

Our annual California Triathlon/Relay and the NYC 4 mile run are enormously successful and have become the premier fundraising events for the Dina LaVigna Breath of Life Fund. To date, we have raised over $295,000. With fundraising efforts such as these and a host of volunteers dedicated to the loving memory of Dina, the Dina LaVigna Breath of Life Fund has already demonstrated its efficacy by vastly improving the PI treatment facilities and Mt. Sinai Hospital in NY. Our goal is for the 2009 Triathlon/Relay and the NYC 4 mile run to be our most successful events to date.

Fund Guidelines

  • The initial focus of the Funds activities will be to upgrade the PI treatment facilities at Mt. Sinai Hospital in New York City, Mattel Children's Hospital at UCLA and Children's Hospital Los Angeles. The aim is to create an environment that allows children, adolescents and adults to receive their infusions in a comfortable and uplifting environment. This shall involve the design and implementation of a pleasant, comfortable, uncluttered environment that is attractively designed and decorated, in an as home-like a manner as possible. The infusion room should provide a variety of diversionary activities and when desired, space for quiet and personal space. (Completed)

  • The Fund will place its highest priority to efforts related to Dina's concerns for the quality of life for children with Primary Immunodeficiencies. The Fund will endeavor to maintain an infusion room environment that children and adolescents will find warm, entertaining and inviting.

  • While pursuing its mission, the Fund will work closely with the Jeffrey Modell Foundation and hospital administrations to elevate hospital Immunology Departments into centers of excellence.

  • The Fund will seek to maintain a budget and source of money that will enable on-going contributions and efforts that support the Fund's mission.

  • When possible, the Fund will seek to obtain donations to assist in carrying out its mission.

  • All administration resources and expenses are supported by volunteer work, the Jeffrey Modell Foundation and donations specified for the purpose. The Fund's goal is that 100% of donations to the Fund will go directly towards patient related activities.

Our triathlon is generously sponsored by

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