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.
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.
|The LaVigna Family: (top row) Merritt, Gary, Brenda, Grant,|
Bill (bottom row)
David, Tom, Ayndrea, Dina, Zachary, Jeff
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
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.
|Grant and Mark at the start of the 1999 Race|
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.
|The 2000 Race Starting Line|
|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
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!
|The New York City 2001 Race|
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.
- 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
- 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
© copyright 2005-2017 Dina LaVigna Breath of Life Fund
All rights reserved.