Thomas and Wendy Sullivan from Alabama host “Lowe Syndrome and Chrome”, a truck show to benefit the LSA. More than 40 Big Trucks and drivers gathered together to spread awareness and raise funds for Lowe syndrome. The Sullivans’, parents of Waylon who has Lowe syndrome wanted to raise awareness and help the community. All funds have been donated to the LSA’s Leland McSpadden Research Fund. Thank you to the Sullivan Family and all their supporters. View the article here!
Anonymous donation in the amount of $50,000 received
In honor of her birthday, Laura Kim raised $2,500
Anonymous donation in the amount of $100,000 received
GivingTuesday raised $3,020 in donations thanks to all our LS members, families and donors for supporting us in our “Circle of Care and Our Vision for a Cure”.
GivingTuesday raised $5,540 in donations thanks to all our LS members, families and donors for supporting us in our “Circle of Care and Our Vision for a Cure”.
In honor of her birthday, Rachel Elizabeth raised $3,200
$14,600 received from the Blackbaud Giving Fund
Anonymous donation in the amount of $275,000 received
Ron and Michelle Jerman gathered with friends and family at the Tribeca 360 Rooftop in New York on November 9, 2012 for an evening of dancing, dinner and raffles to raise over $210,000 for the Lowe Syndrome Association.
Rosana Granillo, Hemet, CA wanted to help her family and friends get healthy by losing weight and at the same time, help her nephew Nathaniel Meester, and the LSA by raising money. The entry fee for participants was donated to the LSA. Total donations: $600
Olivia Izikson asked all her friends & family to give her money in lieu of birthday presents so she could donate it to the LSA in honor of her cousin, Robert from Greece and all the other boys affected by Lowe syndrome. Total Donations: $300
Over the course of twelve months, 16 families and Teams including the Avila Family, Claybron Family, Craven/Gallery Family, Driggers Family, Everitt Family, Haugen Family, IKAN Club from LaPorte, IN, Jacobs Family, Knight Family, Leopold/Forrest Family, Meester Family, Nuncio Family, Otani Family, Sanders Family, Snow Family & Wood Family came together to raise money for Lowe syndrome research by saving change, holding fundraisers, soliciting family, friends, church members, etc. Total proceeds: $12,149
Researcher Claudio Aguliar donates his car to benefit LSA. Proceeds: $913
Sally McSpadden donates a second car to benefit LSA. Proceeds: $TBD
Angela Crapanzano, Canada started selling the LSA cookbook to friends and church members. She has sold over 30 cookbooks
Made by Merel Wharam & Sherryl Wilcox on behalf of their friends, Brenda and Eric Abundis. Total multi-year matching donations: $302
Elizabeth Sobczak wanted to do something special in memory of her friend. In lieu of gifts she asked friends and family to donate to LSA. $510
Mr. Steve Ogden, aka Pedally Steve, dear friend of “Jonathan “Joff” Fisher from Scotland and his wonderful family did a virtual cycle from Land’s End to John O’Groats. Proceeds $1,100
Everitt Family held a Lia Sophia party to raise money for LSA. Proceeds $334
Alex and Christine Knight sold handcrafted Jewelry and lemonade, cider and hot chocolate to raise money and awareness for Lowe Syndrome. Proceeds: $1,500
Artist Judy Knight generously donated the proceeds from the sale of one of her watercolor paintings in honor of her grandson, Alex Knight. Proceeds: $100
Brenda Abundis, LSA member and mom to Tyler, along with family & friends held a Pampered Chef event. Fundraiser Proceeds: $200
Debbie Jacobs, LSA member along with family & friends held a Pampered Chef virtual fundraiser: Proceeds: $100
LSA friend, Diane Dibernardo donates car to benefit LSA. Proceeds: $284
Rachel and Corey Richardson sponsored a golf tournament in honor of their son, Owen benefiting the LSA research fund. Proceeds: Over $6,500
LSA mom, Tiffany Johnson and her brother, Preston, run a half marathon in honor of Tiffany’s son, Andy and raises money for LSA. Total donations: $600
LSA President and mom, Debbie Jacobs runs in memory of her dad, Ernie and raises money for LSA. Total donations: $575
Alexander Izikson decided that instead of receiving present for his birthdays he would ask his friends and family to donate to the LSA in honor of his cousin, Robert Thomas from Greece. Total multi-year donations: $741
A matching donation was made on behalf of the Knight family through Ben’s employer, Millennium Pharmaceuticals. Total multi-year matching donations total: $4,400
Berit Guve celebrated her 70 th birthday by donating her gifts to the LSA in loving memory of her grandson, Edvin. Donations Gifts: $800
Knight and Slack families host book sale on behalf of William Slack and Alexander Knight. Proceeds: $320
Jane Gallery and Buz Craven donate car in honor of their son, Frank and the LSA. Proceeds: $660
Jessica Hanson and family solicited recipes from LSA members and turned them into a wonderful keepsake cookbook. Net Proceeds: Exceeds $2,500
Cissy Faulkner, Dorothy Faulkner and Marcia Jones host a fashion show and wine testing in honor of Logan and Matthew Jones. Net proceeds: $1,400
Sarina Myers joined forces with Spring Hill Nurseries and joined their fundraising cause “Spring Garden” where 45% of a sale is donated to a designated organization. Donations: $150
Margaret and John Cope asked family and friends in lieu of birthday gifts to celebrate their son, Nicholas’ 30 th birthday to donate gifts to the LSA research fund. Total Gifts: $159
Caroline Carrillo, mom to Adam convinces local renowned sports artist, Al Sorenson to captures the spirit and theme of the 2008 conference. Mr. Sorenson presented the Carrillo family with the beautiful painting. Donation: Priceless
Katelyn Otani, Doris Quan, Stan Anbe and family organize mango fundraiser in honor of Katelyn’s brother, Andrew. Proceeds: $400
Fiona & Alan Fisher “Team Fisher,” from Scotland along with family and friends held community Scottish Folk Musical Benefit fundraisers. Total multi-year donations: $5,000
The Contreras, Meester & Medellin families along with family and friends host “Let’s Get it Together to Raise Awareness for Lowe Syndrome” featuring guest of honor world traveler, Rob Thomson. Gala Proceeds: $2,500
Kalie Lippert, Cathy Geyer, family and friends gathered for an evening of fun and games to benefit the LSA. Proceeds: $3,200
Alan Fisher from Scotland ran the 2008 Edinburgh marathon in honor of his son, Jonathan. Donations: $1,000
In honor of business owners, Theresa and Paul (Bubba) Kennedy and their son, Michael, restaurant staff donates a portion of their tips along with customer donations. Donations: $2,000
Grandfather to Kyle Jacobs, Ernest Zarra designs and produces board game in honor of grandson and LSA. Proceeds: $1,800
In honor of business owners, Barry and Martina Reynolds, Ireland and their son’s, Aaron and Cormac, customers and vendors generously donate to the LSA. Donations: $6,000
Katelyn Otani and friends make and sell beautiful origami sailboats in honor of her brother, Andrew and the LSA. Donations: Exceeds $200
Jessica Hanson, Karen Denne and family design unique custom photo albums for sell during the 2008 conference. Proceeds: Exceeds $1,000
On behalf of Pam Bowers, grandmother to Tyler Jackson, Palm Beach County sheriff’s office dispatchers donate to “Care today…Cure tomorrow” holiday cause. Donations: $500
Bright Horizons, Family Solutions awards grant to LSA on behalf of employee Christine Knight, an employee at the Bright Horizons in Foxboro, MA. Grant $5,000
Sun Life Financial, Wellesley Hills, MA matched donations made on behalf of employee, Jennie Diamantopoulou (and family). Total multi-year matching donations: $3,125
Sarina Myers joined forces with representatives from Mary Kay, Pampered Chef & Tupperware to raise money for the LSA. Total multi-year proceeds: Exceeds $500
Cindy Velasco’s sixth grade class from St. James Academy in Solana Beach, CA honored her and her son, John by donating gifts of appreciation during the holiday season. Donations: Total multi-year donations: Exceeds $1,000
The Daena Goldsmith Ramsey Donor Advised Fund at the Rancho Santa Fe, CA awards a grant to the LSA and in honor of the Jacobs Family. Total multi-year grants: $2,500
New York families, Michelle & Ron Jerman & Carolyn & Irwin Everitt along with friends and family turned walking into a great group event benefiting the LSA research. Proceeds: $22,870.
Paul Luken contacted his employer, Anheuser Busch, Inc. and requested a donation for the 2006 conference. Donation: $500
G. D. Anderson Bldg, Co, LLC owned and operated by the Anderson Family from Phoenix, AZ celebrated the holidays with their business associates and raised money in support of LSA. Total Donations: $1,500
New Zealand World Traveler, Rob Thomson skate boarded and cycled around the world and he raised awareness of Lowe syndrome while raising donations. Total Donations: $1,500
Marie & Jeff Clark decided to honor their son, Gregory’s graduation from high school by donating his gifts from family and friends. Total Gifts: $3,000
Rick Steinman, on behalf of his late wife, Patty Steinman dedicated a special memorial in her honor and in honor of their late son, Fritz. The Steinman family is one of the foundering LSA families. Rick Steinman is also the individual responsible for the LSA slogan, “Care today…cure tomorrow”.
On behalf of Maria Williams, Blue Mountain Arts Community Cares Programs, Boulder, CO awards a grant to the LSA. Grant: $500
Wal-Mart Foundation matches donations made by Jessica Hanson, family and friends during their October 2007 Cornish pasty sale. Grant designated for research fund. Grant $400
At the recommendation of Jessica Hanson & Kat Denne, Caribou Coffee Company donated a portion of their day’s profit to the LSA research fund. Proceeds: $300
Caroline Otani who is a law partner with Rush Moore LLP in Honolulu, HI designated the LSA as her charity of choice and in honor of her son, Andrew Otani. Total multi-year proceeds: $840
Karen Avila, family and friends solicit local business to raise money in support of LSA during conference years. Multi-year donations: Exceeds $10,000
Caroline and Lou Carrillo from Oak Lawn, Illinois donated LSA designed T-shirts to sell during conferences. Total multi-year proceeds: $3,100
Employees Community Fund of the Boeing Company on behalf of Judy and Mark Rodgers, Seattle WA. Matching donation: Total matching donations: Exceeds $5,500
Kelly and Ken Basel, Family and Friends sponsored a spaghetti dinner benefiting LSA research in loving memory of their beautiful son, Daniel. Proceeds: $1,607.
Margaret Cope celebrated her 60 th birthday by donating her gifts to the LSA research fund. Total Gifts: $1,871.
New York families, Everitt ,Jerman & DeGori along with friends and family turned walking into a great group event benefiting the LSA clinical research database. Debbie Jacobs and her sister, Marjorie Bray solicited donations from Verizon and its employees in Texas. Proceeds: $7,847.
Cecilia Contreras, Jesse Meester, Family and Friends held a fundraiser at the Gus Burgers Jr. carwash in Hemet, California benefiting Lowesyndrome research in honor of their son, Nathan. Proceeds: $811
After meeting her cousin, Dylan Myatt, 9 year old Samantha Myatt set up a lemonade stand in her home town of Moraga, CA to raise money for LSA and in honor of her cousin Dylan. Proceeds: $15
Sally McSpadden of Kentucky donates car to raise funds for LSA. Proceeds: $365
On behalf of Karen & Elio Avila, Belle Glade, Fl. Donation: $500
Akerman Senterfitt Law Firm in Jacksonville, Florida included the LSA in their list of charitable causes. LSA dad, John Macdonald and the employees at the law firm, donate to the LSA in exchange for the privilege of wearing jeans. Total multi-year donations: Exceeds $3,400
Jessica Hanson, Family and Friends held a Pasty Sale in honor of son, Basel benefiting Lowe syndrome research. Total multi-year proceeds: $3,500
Debbie Jacobs contacted the Allstate Foundation through her agent and the LSA received a grant donation for her volunteerism. Total Grant: $500
The Keeneland Foundation in Lexington, Kentucky awarded a grant to the LSA on behalf of Cissy Faulkner, Aunt and LSA Board member for securing the grant. Total Grant: $500
Expressions, Youth Ministry of Victory Harvest Church, Baton Rouge, LA Donation: $250
Vodaci Technologies, Inc. Employees, Des Moines, IA, Donation: $100
American Express matched a donation made by LSA member, Jackie Fletcher-Gill. Match Donation: $100
BEA Systems/Oracle Redwood City, CA on behalf of employee, Jeff Smith matches gifts. Total multi-year donation: Exceed $3,800 2005 & 2006
The Employee Community Fund of Boeing California awarded the LSA grants to support research on Lowe syndrome. Rocky Nethercot, LSA Father was instrumental in helping LSA secure the grants. Total multi-year grants: $4,500
Lisa Jensen of Dracut, Massachusetts organized a collection among friends and employees in honor of Brian DeFelice. Proceeds: $1,850
Marguerite Chatigny, friends and staff at the Diocese of Oakland, California sponsored a luncheon in honor of Joey Nikban. Proceeds: $265
Verizon Matching Gift: $1,500 and American Express Matching Gift: $200
PRV Electronics: $50
Tim Kane, EVP of Goodway Technologies, and a business associate of Ron Jerman, printed the LSA promotional/membership color brochure with a value of at least $2,500.
Heidi Nikban and family organized an auction fundraiser event, which also included fun activities. Proceeds: $622
Halff Associates, Inc., an engineering firm in Dallas, Texas donated to the LSA in support of their employee, Greg Jacobs. Total multi-year donations: $4,500 2004 – Present
Through the efforts of the Jacob family, a program was started for LSA families to return cartridges, cell phones and gaming devices for donations to LSA conference scholarship fund. Total multi-year proceeds: $2,200
LSA Dad, Jack Smith and his friends skateboarded and traveled 3,000 miles for LSA medical research. Proceeds: $14,000.
Terry Thelen, friend of LSA members Cori and Vinny DeGori organized the event. Proceeds: $800.
Employees at the Home Savings Bank in Youngstown, Ohio voted the LSA its favorite charity and contributed $500.
LSA parent Tina Driggers with the assistance of a jewelry artisan friend sold custom designed glass beads to benefit LSA. Proceeds: $258
Service Roofing & Sheet Metal, NC donated to the LSA in honor of the Richardson Family, Mike, June & Michael. Multi-year donations: Exceed $2,500
The Everitt, Jerman and DeGori families in New York sponsored three fundraising events in honor of their sons, Alec, James and Matthew, benefiting Lowe syndrome research. Family, friends, coworkers and companies sponsored and supported each event. Total multi-year proceeds: $96,592.
Ann Keefer, LSA Board member and Treasurer, walked 600 miles for her nephew, Larry Barnett and the LSA. Proceeds: $40,000
Gill Hill, England ran in a marathon to raise money for the LSA. Proceeds: $300
Employees at “Aesthetics in Dentistry” in Toronto, Ontario collected donations during the holiday season. Proceeds: $400
American Express Foundation matched a parent donation. Matching Gift: $50
Dura/Elan Pharmaceuticals. Donation: $100
A special gift in support of the NIH Research Appreciation Dinner. Donation: $700
An annual investment firm charity event sponsored by the CIBC, World Market and the efforts of David Honigstock, New York Stockbroker. Total multi-year proceeds: $12,257.
The Ervin Family in Georgia sponsored this event. Proceeds: $325
Theresa and Paul Kennedy of Louisiana held this event at the Baton Rouge FOP Hall. Proceeds: $1,350.
Barry Reynolds of Ireland created a flyer about his son and circulated it among his company’s customers and suppliers. Proceeds: $7,700.
Brenda Balek of Iowa organized this event at the fairgrounds. Proceeds: $1,200
Nicole Simoes of New Jersey suggested to her company that the annual holiday charity donation go to the LSA. Proceeds: $2,000
ACS Catering Supplies, England, Donation $700
SLP Machine & Progressive Welding Inc, MN on behalf of Greg Fletcher. Donation: $1,500
Power Cooling, NY: Donation: $500
Lab Plumbing & Heating Co., NY: Donation: $250
Dasherman Inc., NY: Donation: $250
Ron and Michelle Jerman of New York approached the Durst Foundation. The result was a $25,000 gift – the largest single donation ever received by the LSA. The Durst Foundation and Mr. Jonathan Durst continue to be a generous friend to the LSA by supporting Ron and Michelle’s son, James and the New York fundraisers.
Ben Knight approached his company Millennium Pharmaceuticals, Cambridge, MA for a non-profit charity grant donation. Grant $500
British Airlines, Donation: $500
The Daughters of Isabella’s, KS: Donation: $100
Duke Energy: Matching Gift: $50
Gilbert and Bettye Schroerlucke celebrated their Wedding Anniversary by asking family and friends to donate on behalf of their 50 years together : Total Gifts: $1,065
The Annual Bob Wadlin “Ironman” Golf Tournament has been held every year since 1997 in Massachusetts in memory of Christopher Orlando’s grandfather. Organized and hosted for the past nine years by the Orlando, Tessimond, Burnham and Wadlin families benefiting LSA research. Total multi-year donations: $31,700.
Jane Montenero approached the Delta Airlines charity committee and was given a great donation. Donation: $200
This event was held in Florida in memory of Robby and Andrew McConnell benefiting the LSA. Total multi-year donations (1996, 1999 & 2000): $3,000
Jane Montenero of Massachusetts organized a benefit haircut-a-thon at the salon where she works. Proceeds: $2,900
Allyn Krauth of California helped to organize the Hollister Rod & Reel Club’s annual Fishing Derby. Proceeds: $1,200
The local chapter of Independent Order of Foresters, with connections to David & Julie Oliver in England, sponsored a concession booth at the Indianapolis 500 Speedway. Proceeds: $3,500
Patty and Rick Steinman of Illinois purchased and designed 100 LSA t-shirts, which were sold to members. Proceeds: $1,200
Sam Gattlieb of West Virginia helped to organize a benefit basketball game between local TV and radio stations. Proceeds: $100