The Dina LaVigna Breath of Life Fund's major accomplishments include:
- Support for the Jeffrey Modell Foundation's "Roots & Wings" program for those undergoing treatment around the world! (click to read more)
- Raising over $725,000 to help improve the quality of life of patients diagnosed with Primary Immunodeficiency (PI) (click to read more)
- Pledging $750,000 to construct the Dina Room at the in the Mattel Children's Hospital at UCLA (click to read more)
- Improving the PI treatment facilities and Mt. Sinai Hospital in NY (click to read more)
- Sponsorship of holiday party for patients, families and healthcare workers at Mattel Children's Hospital at UCLA (click to read more)
- Funding artwork to improve treatment spaces at Children's Hospital Los Angeles (click to read more)
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Support the "Roots & Wings" program around the world.
Largely due to the efforts of JMF, all newborns in the state of
California are now being screened for Severe Combined Immunodeficiency (SCID). This is the most
serious, life threatening Primary Immunodeficiency. 43 states have implemented SCID screening and the
remaining 7 states are committed to implementation in 2017. Pilot programs are underway in countries
around the world. When children identified through newborn screening require a bone marrow transplant,
support from Dina’s Breath of Life Fund will give families in need the opportunity to travel with their
infant and stay nearby, given that the hospital is not likely to be in their home community.
The support we provide to these families from Dina’s Breath of Life Fund is through full and active
participation with the Jeffrey Modell Foundation’s “Roots & Wings” program. “Roots & Wings” is a very
meaningful program created by the Jeffrey Modell Foundation to work hand-in-hand with the Newborn
Screening for Severe Combined Immunodeficiency (SCID) statewide efforts. This Program is for those
newborns who have been identified at birth with a life threatening condition like SCID or other related
T-Cell Lymphopenias. The “Roots & Wings” Program provides travel (the “Wings”) and related support
(the “Roots”) to so many families in need, whose babies have been diagnosed with SCID, require a bone
marrow transplant and have to travel great distances for this life-saving procedure. Families often have to
stay in a Ronald McDonald House or similar housing for many months, and they may not have the funds to
do so. This program strives to make life easier for these families, reduce the financial burdens, and enable
the child to have a chance at life, a chance to survive, thrive and, in most cases, be cured. Your support and
encouragement will allow “Roots & Wings” to continue … to save lives one child at a time.
The last year has been a great and productive one. Almost all of the states in the United States are
now screening for SCID and so the requests have grown steadily. “Roots & Wings” has helped numerous
families in both the United States and throughout the world. Some of the most recent “Roots & Wings”
Grants have been provided to places as diverse as Russia, the Philippines, the Navajo Nation, Puerto Rico
Raising over $725,000 to help improve the quality of life of Primary Immunodeficiency (PI) patients
As a direct result of the overwhelming success of the 9 Triathlons in Ventura,
California and the 5 annual 4-mile runs in New York City the Breath of Life Fund has
raised over $725,000 to improve patient care facilities and related matters.
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Pledging $750,000 to construct the Dina Room in the
Mattel Children's Hospital at UCLA
On June 28, 2004, one day after the 6th annual Breath of Life Ventura Triathlon,
Dina's father, Gary LaVigna, announced at a UCLA press conference that as a direct
result of the overwhelming success of the annual triathlons the Dina LaVigna Breath Of
|Architectural rendering of |
new "Dina Room" at UCLA
Life Fund pledged $750,000 over five years (2004 - 2008) to The UCLA Foundation
for construction, renovation and expansion of the current physical space for outpatient
pediatric infusions in the Mattel Children's Hospital at UCLA. The
name of this new state of the art facility is 'Dina's Beach', in Dina's memory.
Dina's Beach was completed in 2007 (click here for pictures of the ribbon cutting!).
Gary LaVigna announces The Dina LaVigna |
Breath Of Life Fund's $750,000 gift
to construct the new 'Dina Room"
Dina’s Beach is now a critical component of what is the most outstanding PI research,
treatment and outreach diagnostic center in the world sponsored by the Jeffrey
Modell Foundation (JMF). The Dina LaVigna Breath of Life Fund intends to continue
its financial support of the state of the art facility. This will be
to meet our financial pledges to UCLA for Dina’s Beach, to finish the work that
still needs to be done there, and to make sure that it remains the world
standard for providing the best environment possible for those children who
need to spend hours receiving necessary treatment.
|Nurse's Desk at |
new "Dina's Beach" at UCLA
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Improving the PI treatment facilities and Mt. Sinai Hospital in NY
Immediately after starting the Dina LaVigna Breath of Life Fund, we worked with
the prestigious Mt. Sinai Hospital in New York City to improve the clinical space
that serves patients with Primary Immunodeficiency (PI). While small steps were
taken early on, our ultimate goal was to obtain additional treatment space and make
the new space more uplifting and warm for the patients.
PI patients spend long hours each month in the treatment room receiving intravenous
treatment injections to control their PI. When treatments fail, patients spend many
more hours in the hospital. Although the Division of Clinical Immunology at Mt.
Sinai (and its associated Jeffrey Modell Laboratory) is world renown for its treatment
and research related to PI, the patient facilities were overcrowded, sterile looking,
and offered limited diversions for patients receiving their treatments.
On April 17, 2000 Dina's dream became a reality when the Dina LaVigna "Breath of Life"
Room was dedicated in Mt. Sinai Hospital. The "Dina Room" as it is now commonly known,
is a state-of-the-art infusion clinic that will treat children and adults suffering from
Primary Immunodeficiency disorders. The "Dina Room" is considered the best of its kind
in the world. Although New York City hospital space is a precious commodity, we were able
to increase the size of the treatment room over 100%.
The space boasts a very stylish and homey environment with comfortable reclining chairs,
TV, VCR, two computers with internet access, patient desks with telephones, a coffee
machine and a refrigerator. The room has been updated with a nursing station with space
to accommodate mixing pharmaceuticals, storing medical supplies, patient files, and office
desk and equipment. The room has been decorated throughout with pleasing pictures, end
tables, plants and the participant medallions from each year of the Breath of Life
Triathlon/Relay Fundraiser. In addition, the Dina LaVigna "Breath of Life" Room contains
amenities such as subscriptions to various magazines, a collection of videos, computer
games, portable radio tape players, children's toys, and arts and crafts supplies.
The patients and nurses are ecstatic with their new surrounding and diversions.
FANCY FINANCING: YOUR $1 = $8
Financing the effort was one of the significant components of making the Dina Room a
reality. All Dina LaVigna Fund contributions were matched at least twice, in some cases
three times, to finance the new infusion room.
It worked like this: every dollar received by the Dina LaVigna Fund was fully matched
by the Jeffrey Modell Foundation (making $2).
In building the infusion room, Mr. Sinai Hospital fully matched the Funds' effort bringing
the total to $4. If an employer also matches the gift, with the
Jeffrey Modell Foundation
and Mt. Sinai matching, the total effect of $1 contributed was $8.
To complete the financing effort, Novartis and Baxter Pharmaceutical firms generously
contributions to the effort.
Due to the tremendous success of the Dina Room project, the Dina LaVigna Fund will use
this "new math" as the model for financing all future efforts. According to Mt. Sinai,
this funding scheme was the first of its kind that they know of. All parties in the
money chain benefited tremendously from the effort. Be proud, it all started with your
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Sponsorship of holiday party for patients, families and healthcare workers at Mattel Children's Hospital at UCLA
Each year the Division of Hematology-Oncology at the UCLA Mattel Children's Hospital hosts
a holiday party for the children with primary immunodeficiency, other blood diseases and
cancer. This tradition began about 25 years ago.
Beginning in 2001, the Dina LaVigna Breath of Life fund provided funding for this annual
December holiday party. It is our intention to continue to sponsor this event to encourage
patient, family and healthcare worker interaction and well-being.
In December 2002, the party was larger than ever and was attended by over two hundred and
fifty children and their families, and was held in Covel Commons Sunset Center on the UCLA
campus. Activities for the children included making ornaments, decorating cookies, and
meeting Santa Claus. A wonderful buffet was provided by UCLA catering department. Dodger
outfielder Dave Roberts was all smiles as he signed autographs and chatted with the patients.
All of the children who attended the party received gifts, generously provided by Mattel, Inc.
The Dina LaVigna Breath of Life Fund is proud that it again was a major sponsor of the
annual UCLA Mattel Children's Hospital holiday party in December, 2004 for the children
with primary immunodeficiency, other blood diseases and cancer. The sponsorship of this
holiday party, that means so much to these children, is made possible because of the money
we raise from the annual Breath of Life Ventura Triathlon/Relay and the NYC 4-mile race.
Most of these children have some form of life threatening disease. They are in and out of
the hospital receiving various types of treatment. It was a memorable event for them as they
look forward to the party all year.
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Funding artwork to improve treatment spaces at Children's Hospital Los Angeles
In the Fall of 2001, the Dina LaVigna Breath of Life fund made financial contributions
to the Department of Allergy and Immunology at Children's Hospital Los Angeles. The
contributions were used to purchase picture frames to hang artwork created
by patients of the Departments. The purpose of the artwork was to make the clinical
spaces more attractive and inviting to patients, their families, and care givers.
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|Our triathlon is generously sponsored
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All rights reserved.