Along with the welcome promise of summer holidays and warmer weather, this July once again marks the return of the Westchester annual Independence Day Parade.

This year, the parade should be especially exciting for one little girl. Jessica Leoni will celebrate the arrival of her fifth birthday this July by riding atop a red fire engine traveling down Loyola Boulevard. Quite an endeavor for a small girl- but Jessica's fifth birthday marks an extraordinary feat in her own challenging battle.

When Jessica was born in July of 1997, doctors were concerned. Baby Jessica was jaundiced at birth and was smaller than most other babies her age. She had trouble holding her head up and could not sit up on her own. A distended liver and spleen had led to an enlarged abdomen, and at just four months of age, baby Jessica was diagnosed with cirrhosis of the liver.

In retrospect, Jessica's parents, Anthony and Lisa Leoni consider themselves fortunate. Doctors were able to affirm a diagnosis early in Jessica's life to explain the troubles faced by their little girl. The prognosis: Niemann-Pick Type C Disease (NP-C).

The intimidating name identifies a rare genetic disease believed to affect fewer than 600 children across the United States. This devastating metabolic disorder inhibits the body's ability to properly store and metabolize cholesterol. Consequently, the accumulation of ever-increasing amounts of cholesterol damages the liver, spleen, and brain. The mutilation caused by increased storage of cholesterol within cells of the brain is similar to the neurological degeneration seen in Alzheimer disease.

Gradually, a child afflicted by NP-C loses the ability to gaze up and down, to speak without slurring their words, to walk normally, and even to swallow food. Some children suffer seizures, often after laughing too hard.

Lisa and Anthony Leoni walk a tightrope that thinly separates fear from hope. The good days of hopeful, grateful smiles separate the dark nights where fear creeps into their sleep and threatens to shatter their dreams. Sadly, children affected by this disorder rarely live into their teenage years.

Determined to fight for Jessica's future, the Leoni family greets the grim prospective of NP-C with defiance. As no cure or treatment exists for Jessica's affliction, the Leonis have fashioned their own approach encompassing spirituality, physical therapy, a sensible diet, and alternative health care including homeopathic medicine.

If admired for their courage, Jessica's father simply says he and his wife have no other option but to fight for their daughter's well being. Anthony and Lisa Leoni, both Loyola Marymount University alumni, say of
their family life that they have resolved to live in the moment, but not for the moment. They focus on treasuring the accomplishments of small aspirations; Anthony Leoni cherishes the memory of one dream come true- to hold his daughter's hand as he walks her to her first day of school.

Through dance lessons and school, the Leoni family fights NP-C by nurturing a happy childhood for Jessica. She is a warm, enchanting little girl with curly brown locks that dance on her shoulders like she
dances in the studio, light and lovely. Though her classmates energetically run through their paces, she cautiously and gingerly mimics her teacher the best she can. Her movements are a bit more hesitant, but focused. What Jessica lacks in physical ability, she makes up for in attentiveness and passion.

While dancing provides a delightful diversion for Jessica, her parents welcome it as physical therapy for their daughter, and emotional and spiritual therapy for the family. The Leonis just celebrated Jessica's fifth dance recital this past June.

Jessica's family also finds solace in the support of other families with children afflicted by this dreadful disease. Seven years ago, three of Cindy and Mike Parseghian's four children were diagnosed with NP-C. Since then, the Parseghian family of Tucson, Arizona has lost two children to this disease.

Mike Parseghian's father Ara, retired football coach of the Notre Dame Fighting Irish, firmly believes that "there will be no cure without research and no research without funding."

Through the establishment of the Ara Parseghian Medical Research Foundation, the Parseghian family has raised more than twelve million dollars towards NP-C research, and has helped to increase the number of labs involved in NP-C research in America from 2 to more than 20.

The resolve of the Parseghian family to find a cure or treatment for NP-C encourages the Leoni family in their fight for Jessica. Drawing inspiration from their close friendship with the Parseghian family, the
Leonis have undertaken their own fundraising efforts to support NP-C

research. As an alumnus of the Theta Eta chapter (LMU) of the Pi Kappa Alpha fraternity, Anthony Leoni helped to mobilize a "World's Finest Chocolate" bar drive carried out by undergraduates at several college campuses. Anthony's fraternity brothers succeeded in raising $10,000- all of which was donated to the Ara Parseghian Medical Research Foundation.

Not long ago, the Leonis decided to inform Jessica's dance instructor of Jessica's condition. Lisa Diaz, who runs the Westchester Dance Center, was motivated to fight for Jessica. She designed a raffle, selling tickets in conjunction with a recent dance recital. Her venture raised over $1000 to support the Ara Parseghian Medical Research Foundation. Through these pursuits, as well as other fundraising enterprises, the Leoni family has raised over $100,000.

Despite Jessica's current well-being, and exciting successes, the Leonis cannot help but feel pressured by a sense of urgency. Jessica's mother Lisa openly states that, "We don't know when the disease will start to really show in Jessica so we have to work hard now to take the best care possible of her." They look to each new day with prayerful hope, cherishing each tomorrow with their beloved little girl.

To coincide with the National Niemann-Pick Disease Foundation's Family Conference- a forum for families affected by this disease to support each other this July 20th & 21st, Anthony and Lisa Leoni plan to hold
a Spiritual Convergence. This Communal Spiritual Offering of Prayerful Support asks the Westchester and Playa del Rey communities to pray for Jessica, and for families affected by NP-C.

This Fourth of July will be especially significant for many American families. The Leoni family is no
exception. When Lisa Leoni asked her daughter if she would like to ride on a red fire engine in this year's parade, little Jessica timidly turned down the offer. However, when told that the firemen needed Jessica's help aboard the engine, Jessica bravely said okay- but only with her dad's company. Jessica's bravery epitomizes both the closeness and the courageous outlook of the Leoni family in battling NP-C. As Ara Parseghian has said, families affected by this disease are in "a race against time." This is a fight which Jessica's family cannot lose. Jessica's precious life depends on it!

Be sure to wave to Jessica and Anthony Leoni atop the fire engine this Fourth of July!

For more info about Jessica, NP-C, or the Spiritual
Convergence, please visit www.fightforjessica.com.

Ara Parseghian Medical Research Foundation
3530 E. Campo Abierto,
Suite 105
Tucson, Arizona
85718-3327
Phone: (520) 577-5106
Fax: (520) 577-5212
E-Mail: victory@parseghian.org

Dear Fellow Westchester Ministerial Council Member:
We are writing to you today to request your
participation in an unusual, but important effort. The event, we're calling it a Spiritual Convergence, centers around a very special little girl and her need for our Spiritual Support.

Jessica Leoni is a member of Visitation Parish and attends Mass regularly with her parents Lisa and Anthony Leoni. She attends preschool at La Tijera Methodist Center for Children. Jessica has been
diagnosed with an extremely rare disorder called Niemann-Pick Type C Disease. It is a terrible disease. Children afflicted with NP-C cannot properly metabolize and process cholesterol. Eventually Niemann-Pick children lose their ability to walk, talk
and swallow. Children with this disease rarely live into their teenage years. We are rallying around this little girl and her family and are asking for your leadership and your congregation's participation in our Spiritual Convergence. We are focusing specifically on the weekend of the July 20 & 21, 2002.
That is the time of the National Niemann Pick Disease Foundation's Family Conference, a time when many NP-C families come together to meet and support one another. Please join us and help lead all in Westchester in prayer for Jessica, her family and all the other family's affected by Niemann Pick. The enclosed will give you an idea of how you might join
us. Thank you for helping us make this a
Westchester-wide event.
Yours truly,

Msgr. Timothy O'Connell
Pastor, Visitation Church
Reverend Brad Beemon
Pastor, La Tijera United Methodist

Last month the HomeTown News featured a cover story on Jessica Leoni, a five-year- old girl diagnosed with Niemann-Pick Type C Disease (NP-C). Jessica²s father Anthony has described the article as a sort of "coming out" by their family to the community regarding Jessica²s illness. The response they have received from the community has been positive and encouraging.

The Leoni family feels grateful for efforts several local churches have made in providing spiritual support. St. Anastasi's in Playa del Rey has posted a bulletin board with information and pictures concerningJessica and NP-C. The church attended by the Leoni family, Visitation, also has included Jessica in their prayers.

Jessica lives in Westchester with her parents, who are doing everything they can to promote their daughter's well being. Approaching the battle against Jessica's condition with a variety of methods, they are sure to include treatments addressing physical, spiritual and emotional health.

While local Westchester churches provide spiritual support for the family, Jessica visits several doctors to help care for her physical health. Homeopathy has proved to be one of Jessica's more successful forms of therapy. These treatments have resulted in shorter and less dramatic periods of illness. Jessica visits her homeopathic physician about every four to six weeks, and is due for her next appointment in August. Jessica also sees a pediatric gastroenterologist about once every six months.

Anthony's discovery of homeopathy as a possible form of treatment for Jessica perfectly exemplifies the benefits of increased awareness of Jessica's illness. It is for this reason that awareness raising is a priority for the Leoni family. It

was a lunchtime catching-up conversation with an old friend that lead Jessica's father to first contacting their current homeopathic physician.

The Leoni family is planning two fundraising events in upcoming months. There will be a benefit jazz concert featuring Michael Paulo on September 29th. In mid-October, a casino night will be held. For more information about how to become involved in these and other events, visit fightforjessica.com

As knowledge of NP-C widens, the Leoni family hopes to meet people who may be able to contribute to finding a treatment and cure for the disease. Money collected
through fund-raising supports much-needed research on NP-C, a disease about which little is known.

As summer takes its leave and fall descends upon Westchester, Jessica Leoni and her family will be preparing for several exciting happenings. To start things off, five year-old Jessica will be entering kindergarten at La Tijera United Methodist, where she has been attending pre-school for the past two years. After pondering their choices for a substantial amount of time, her parents finally decided that it would best for Jessica to stay at United Methodist for kindergarten.

Jessica and family enjoyed a summer that was full of family activities. Highlights include two vacations and riding on a fire engine in Westchester's Fourth of July Parade. For their first vacation, the L eonis went camping in Carpenteria. Their second escape from L.A. consisted of a week-long visit to Monterey, Santa Rosa and San Luis Obispo. This second excursion was part of a celebration of Jessica's godfather's 40th birthday.

Anthony, Lisa, and Jessica Leoni

During the next couple of months, the Leoni family will be involved in two events benefiting the search for a cure for Niemann-Pick Type C Disease (NP-C). Jessica has been diagnosed with NP-C, a genetic disease that deprives children of their ability to walk, talk and swallow. Children with NP-C rarely live into their teens, and further research on the disease is desperately needed. The following two events will benefit the Ara Parseghian Medican Research Foundation to find a cure for NP-C. To learn more visit www.fightforjessica.com.

Jazz Concert
-featuring jazz artist- Michael Paulo Sunday September 29th
4:00 p.m. & 7:00 p.m.
The Boardwalk 2 Restaurant and Club 10433 National Blvd.
(just off the 10 fwy at Overland)
310-837-5245
For tickets and information contact Ron Villa at 310-450-8833 or e-mail: ron.villa.b85a@statefarm.com

4th Annual Fight for Jessica Leoni Benefit
Saturday October 12th
Casino Night
We'll have lots of fun: Gaming! Entertainment! Good Friends! Good Cause! We are looking for: sponsors, door prizes, silent auction items, volunteers. Please let us know how you can help. Previous yearsâ prizes have included: weekend getaways, a Shaq jersey and spa baskets.

Jessica has a blast at a Dodger game with a friend.

As September came to a close and the month of October began, Jessica Leoni went about her life like any other child. She started Kindergarten, continuing her education at La Tijera United Methodist Center for children. After a memorable summer involving everything including taking part in the Westchester 4th of July Parade, it was time to create memories at school, while of course learning at the same time.

Jessica, the HomeTown Angel for the Westchester communityâs newspaper, is afflicted with Niemann-Pick Type C Disease. NP-C is a genetic pediatric neurodegenerative disorder which causes progressive deterioration of the nervous system. The month of October is Niemann-Pick Awareness month and the Leoni family, like families across the nation will be participating in their own special way. On Saturday, October 12th, will be the 4th Annual Leoni Family Casino Night and Benefit featuring a hosted evening of food, music and entertainment.

Jessica Leoni

Partnering with the Ara Parseghian Medical Research Foundation, the Jessica Leoni Trust will donate the funds raised at the event to the Parseghian Foundation to be used for research that will help Jessica and hundreds of other children afflicted with NP-C. For more information about the fund-raising event see pg. 22 or call (310)6496125 ASAP. Visit Jessicaâs website at www.fightforjessica.com - to learn more and to view articles from previous months.

4th Annual Leoni Family Casino Night and Benefit

As many know, the Leoni family and friends are committed to the fight against Niemann-Pick Type C Disease, which afflicts five year old Jessica Leoni. NP-C is a genetic pediatric neurodegenerative disorder which causes progressive deterioration of the nervous system. Currently, there is no treatment or cure, and affected children rarely live into their teenage years. The Jessica Leoni Trust has united with the Ara Parseghian Medical Research Foundation to find a treatment and cure for this devastating condition. Funds raised during our event for the Parseghian Foundation will continue to fund 22 research institutions nationally and internationally and a first clinical drug trial.

More than 95% of all funds raised go directly towards research that will help Jessica as well as those fighting heart disease, Alzheimerâs and other disorders that appear to be related to the metabolism of cholesterol. The night will feature a hosted evening of food, music and entertainment. Gaming packages, raffle and silent auction items can be purchased during the event. The event will occur on Saturday, October 12th at the Skirball Cultural Center, 2701 North Sepulveda Blvd, Los Angeles. Hors dâOeuvres will be served from 7:00-8:00pm and gaming and program will follow. Dressy casual attire is in order. Please call 310-649-6125.

Blackjack, roulette and crap tables rolled out at The Skirball Cultural Center on October 12th for the Fourth Annual Leoni Family Casino Night and Benefit. The night was fun and a great success for all involved. Attendance rose from approximately 250 people last year to about 325 people at this year's event, indicating an increase in support and awareness about Niemann-Pick Type C Disease (NP-C). Jessica Leoni is afflicted with NP-C, a rare genetic disease depriving children of the abilities to walk, talk and swallow.

In addition to casino games, araffle and silent auction helped raise $35,000, which will go to the Ara Parseghian Medical Research Foundation. Many different prizes were available, including a Shaq jersey, and golf and spa packages. The Leoni's are pleased to have met their fundraising goal for the evening. The mission of the Ara Parseghian Foundation is to fight NP-C. The organization's executive director, Glen Shepherd, was also part of the night's activities. Several checks were presented to the Leonis on behalf of businesses. Lisa Diaz, of Westchester Dance Center presented a check from a raffle she held,

and Tanya Domier presented a check from her company Advantage Sales and Marketing.

The Leonis also showed their appreciation for several people who have helped them with their cause. Warren Bell, an agency field executive for State Farm Insurance, was presented with a plaque in thanks for underwriting Casino Night. A Certificate of Appreciation was awarded to Jeff Elder, Captain of the Los Angeles City Fire Department at Fire Station 5 in Westchester.

Jessica's cousins, who raised money through their soccer league games, also made a presentation. The three boys wrote letters to people they know asking for sponsorships for their "soccer challenge." Pledges were gathered for each goal scored and each goal blocked.On the Sunday prior to Casino Night, Jessica's father Anthony made an appearance on the radio station K-EARTH 101. During the program "It's Happening," Anthony Leoni was able to talk about the Casino Benefit, NP-C and their cause.

While November proved to be a fairly quiet month for the Leoni Family, holiday festivities in December will surely keep the family busy.

On Sunday, December 15th, Jessica Leoni will be performing a tap routine as part of Westchester Dance Center's winter dance recital. The dance center holds two recitals per year, with the winter performance slightly less formal, and not quite as big as the spring show. Despite this difference, the winter recital is still a very exciting event for the many dancers and their friends and family.

The recital will be held at the Senior Center. Jessica's class, Combo Three, is made up of about 12 dancers, and they practice both tap and ballet. There will be about 20-30 numbers performed at the winter recital.

During the month of December, and especially once Jessica is released from Kindergarten for winter vacation, the Leoni Family plans to engage in local holiday activities such as attending the Westchester Holiday Parade. Last year's trip to the "Glory of Christmas" performance at the Crystal Cathedral impressed Jessica

and her parents enough to inspire them to go again this year and bring more family members with them. The winter break will also most likely include a trip to Disneyland.

Looking ahead to January, the Leoni family is planning to hold a jazz concert as their next major fundraising event. The concert has been in the works for several months, and may have to be pushed back again, but it will happen sometime in the beginning months of 2003.

Like previous Leoni family benefits, the jazz concert will raise funds to donate to the Ara Parseghian Medical Research Foundation. Their research will help Jessica Leoni and hundreds of other children who are afflicted with Niemann-Pick Type C Disease (NP-C). NP-C is a genetic pediatric neurodegenerative disorder, which causes progressive deterioration of the nervous system.

For more information about NP-C and read previous HomeTown News article about Jessica, visit: www.fightforjessica.com

On Saturday, April 26th the Westchester community will rally together in support of five-year-old Jessica Leoni at "Everyone Needs a Hero," an event honoring local heroes. Jessica, Westchester's HomeTown Angel, has been diagnosed with an extremely rare neurological disorder called Niemann Pick Type C Disease. Children with NP-C rarely live into their teenage years. Currently there is no treatment or cure for this deadly disease.

"Every child deserves the chance to run, play, learn and laugh. When a child that you love faces a disease where these things can't be taken for granted, it inspires your soul and compels you to take action," says event organizer Nicole Carmickle, a pediatric nurse in Westchester. Carmickle, along with Lisa Diaz of Westchester Dance Center, asked Jessica's parents what they could do to help. Along with several other Westchester residents, Carmickle and Diaz have organized a banquet honoring local heroes Captain Jeff Elder of the Los Angeles Fire Department, and Los Angeles Police Officers David Morales and Stacey Witty.

During the program Elder, Morales and Witty will be recognized, and entertainment will be provided by the Westchester Dance

Center. Jessica herself will participate in the dance portion of the program, and the entire function will be held at the Furama Hotel on Manchester and Lincoln Blvd. Organizers Diaz and Carmickle strongly urge the Westchester community to show their support for Jessica and all children with NP-C by attending the banquet and/or making a donation. Both money and awareness will be raised through the banquet. The money raised will go to the Ara Parseghian Medical Research Foundation - the leader in finding a treatment and cure for NP-C.

LAFD Captain Jeff Elder is an important supporter of the Leoni family. He was responsible for making possible Jessica's ride on the fire engine at last year's Fourth of July Parade, and is a true friend and source of strength to the family.

Recommended by LAPD Pacific Division Captain Wally Graves, officers Morales and Witty will be recognized for their generosity and compassion towards Edwin, a boy with cancer. Morales and Witty met Edwin while investigating an incident. Edwin was not involved in the incident, but he provided translation assistance to the officers. After asking Edwin about his shaved head, the officers learned he was undergoing chemotherapy. The officers then met his family, and have since established a friendship with them, periodically checking-in on Edwin's progress and bringing Edwin and his sister presents at Christmas.

In his letter nominating these two officers to be recognized by the Jessica Leoni Trust, Captain Wally Graves says, "Every person in life draws strength from all types of sources. There is little doubt that part of Edwin's strength is derived from the selfless acts of humanity displayed by Officers Witty and Morales."

To learn more about the Fight For Jessica, please visit www.fightforjessica.com. For more information on the Ara Parseghian Medical Research Foundation, visit www.parseghian.org.

Sponsorship Information: (all levels include publication in program)
Title Sponsor: $5,000 (includes two tables) Diamond Sponsor: $2,500 (includes one table)
Gold Sponsor: $1,000 (includes four dinners)
Silver Sponsor: $500 (includes two dinners)
Table Sponsor: $320 (8 per table)
Program Sponsor: $250
Hometown Angel Sponsor: $100
Dinner Attendees: $40 per person

Phone: (310) 649-6125
Mailing address: The Jessica Leoni Trust
P. O. Box 83744
Los Angeles, CA 90083-0744

The upper banquet hall at the Furama Hotel was filled with the friends and family of five-year-old Jessica Leoni on the evening of April 26, 2003. As the night unfolded, the event's theme, "Everyone Needs a Hero," became apparent to all in attendance.

Three special heroes were honored: LAPD Officers David Morales and Stacey Witty (Both shown above), and Fire Captain Jeff Elder (Shown below). These local heroes were chosen for their exceptional service, generosity and compassion.

While prizes were raffled off throughout the evening, the top item came as a last minute offering from Captain Hillman of the LAPD Pacific Division. Audience members bid on the chance to ride with Captain Hillman during one of his shifts (up to eight hours). The patrolling experience would include dinner at Tony P's courtesy of Hillman and of course a stop at a doughnut shop!

Event chair Nicole Carmickle (Shown above) and entertainment director Lisa Diaz(Shown at right) organized the event to honor heroes and to benefit the Fight for Jessica. They wanted to do something to help Jessica and all children afflicted by Niemann-Pick Type C disease (NP-C). Community support has been a very important part of Jessica's growth and her fight against NP-C.

As various speakers addressed the audience, Jessica and her parents Anthony and Lisa were also repeatedly acknowledged for their courage and vitality in the face of such a great challenge. The family has proven to be as heroic as those being formally honored that night.

For more information about the Fight For Jessica, visit: www.fightforjessica.com

Jessica Leoni will celebrate her sixth birthday on July 6, 2003. This has been an important year for Jessica, who also graduated from Kindergarten on June 26. In the fall she will be starting the first grade at Visitation School in Westchester. She continues to dance at the Westchester Dance Center, and recently had a recital which was held at Westchester High School. On June 21 she performed a "Singin' In the Rain" tap number with her dance partner. This summer Jessica looks forward to participating in the Fourth of July Parade, as she did last year.

In May, Jessica's father Anthony had the opportunity to attend the International Conference on Niemann-Pick Type C Disease (NP-C) in Tucson, Arizona. Jessica suffers from NP-C. Fortunately,

she has a strong and caring network of family and friends who are helping find a cure for the disease. Anthony Leoni attended the scientific conference in order to help put a human face on NP-C.

The conference was designed to provide a forum for scientific activity in the areas of genetics, lysosomal storage disorders, and pediatric neurodegenerative disorders with special emphasis on Niemann-Pick Type C disease research. Anthony says there are "plenty of promising things that are happening" in terms of developing treatments for NP-C. One of those promising things is the identification of similarities between NP-C and Alzheimer's disease. NP-C research and Alzheimer's research may be able to benefit each other.

The Leoni family practices a well-rounded approach to ensuring Jessica's well-being in light of her potentially debilitating affliction. In addition to physical care, the family strongly believes in the power of spirituality. Each year they hold "Spiritual Convergence." This year it will be in August, during the same weekend of the National Niemann Pick Disease Foundation's Family Conference, a time when many NP-C families come together to meet and support one another. All well-wishers are invited to participate in the Spiritual Convergence through prayer and worship. It is not a physical gathering, but a spiritual one. Many of these pledges have been posted online at www.fightforjessica.com. The Spiritual Convergence is meant to focus prayers on all people with NP-C.

NP-C is a rare neurological disorder depriving children of the abilities to walk, talk and swallow. This disorder causes progressive deterioration of the central nervous system due to the body's inability to metabolize cholesterol. Consequently, large amount of cholesterol accumulate within the liver, spleen, and brain. This metabolic disorder leads to a series of neurological problems. It has been termed as a childhood form of Alzheimer's.

To learn more about NP-C and the Fight For Jessica, please visit www.fightforjessica.com.