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

GivingTuesday raised $11,116 in donations

Thomas and Wendy Sullivan raise $3,120

In honor of her birthday, Rachel Siconolfi raised $7,100

GivingTuesday raised $11,000 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”.

Parents Fitz Carlie & Laura Kim raised $10,547 to raise Lowe syndrome awareness in honor of Fitz’s birthday.

The Jerman Family along with friends went all out at the 4th biennial James Jerman Gala New York City Fundraiser. On November 9, 2018, Ron and Michelle Jerman hosted the fourth fundraiser at the Tribeca Rooftop in NYC in honor of James’ 21st birthday. The gala raised $318,950 for Lowe syndrome research.

GivingTuesday raised over $3,200

GivingTuesday raised $8,653.

On November 4, 2016 James Jerman Gala raises $270,000 for Research. Almost 500 people gathered at the Tribeca Rooftop in New York City to honor James and the Jerman family to support research on Lowe syndrome.

Karen Avila collected over $8,000 from local merchants, family and friends in Florida for the LSA Conference Scholarship Fund.

The James Jerman LSA Second New York City gala raises more than $215,000 for research

Second Annual Golf outing in Ohio. Corey & Rachael Richardson held their “Second Annual Owen Open Golf Tournament” of behalf of their son, Owen. The Richardson family raised over $3,600 for medical research.

This is the third conference fundraiser for the Avilas’ and Karen raised an unbelievable amount of $10,500 for the conference scholarship fund. Karen has raised over $19,000 since starting their fundraising efforts in 2008

James Jerman Gala:

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.

Drop it Like it’s Hot:

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

Birthday Bash:

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

Be the Change:

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

Donate a Car Program:

Researcher Claudio Aguliar donates his car to benefit LSA. Proceeds: $913

Donate a Car Program:

Sally McSpadden donates a second car to benefit LSA. Proceeds: $TBD

Cookbook Seller Extraordinaire:

Angela Crapanzano, Canada started selling the LSA cookbook to friends and church members. She has sold over 30 cookbooks

Kraft Food Foundation Matching Gifts:

Made by Merel Wharam & Sherryl Wilcox on behalf of their friends, Brenda and Eric Abundis. Total multi-year matching donations: $302

Fundraising for my Friend, Adam Carrillo:

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

Pedally Steve:

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

Lia Sophia Jewelry Fundraiser:

Everitt Family held a Lia Sophia party to raise money for LSA. Proceeds $334

Jackson, NH Farmers and Artisans Market:

Alex and Christine Knight sold handcrafted Jewelry and lemonade, cider and hot chocolate to raise money and awareness for Lowe syndrome. Proceeds: $1,500

Loving Grandmother:

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

Pampered Chef Fundraiser:

Brenda Abundis, LSA member and mom to Tyler, along with family & friends held a Pampered Chef event. Fundraiser Proceeds: $200

Pampered Chef Fundraising:

Debbie Jacobs, LSA member along with family & friends held a Pampered Chef virtual fundraiser: Proceeds: $100

Donate a Car:

LSA friend, Diane Dibernardo donates car to benefit LSA. Proceeds: $284

Owen Open Golf Tournament:

Rachel and Corey Richardson sponsored a golf tournament in honor of their son, Owen benefiting the LSA research fund. Proceeds: Over $6,500

I Run for Andy:

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

Running for my Dad:

LSA President and mom, Debbie Jacobs runs in memory of her dad, Ernie and raises money for LSA. Total donations: $575

Big Difference by a Young Man:

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

Matching Employee Program:

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

Birthday Celebration:

Berit Guve celebrated her 70 th birthday by donating her gifts to the LSA in loving memory of her grandson, Edvin. Donations Gifts: $800

Jackson, NH Book Sale:

Knight and Slack families host book sale on behalf of William Slack and Alexander Knight. Proceeds: $320

Donate a Car:

Jane Gallery and Buz Craven donate car in honor of their son, Frank and the LSA. Proceeds: $660

LSA Cookbook:

Jessica Hanson and family solicited recipes from LSA members and turned them into a wonderful keepsake cookbook. Net Proceeds: Exceeds $2,500

The Little Black Dress Fundraiser:

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

Flowers for the LSA:

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

Birthday Celebration:

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

Artist Inspired by Mom’s Love:

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

Mangos Make a Difference:

Katelyn Otani, Doris Quan, Stan Anbe and family organize mango fundraiser in honor of Katelyn’s brother, Andrew. Proceeds: $400

Highs and Lowes:

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

Raising Awareness Gala:

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

Candlelight Bowling Fundraiser:

Kalie Lippert, Cathy Geyer, family and friends gathered for an evening of fun and games to benefit the LSA. Proceeds: $3,200

Dad Runs for LSA:

Alan Fisher from Scotland ran the 2008 Edinburgh marathon in honor of his son, Jonathan. Donations: $1,000

Caring Staff and Customers:

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

Goofy Golf on a Rainy Day:

Grandfather to Kyle Jacobs, Ernest Zarra designs and produces board game in honor of grandson and LSA. Proceeds: $1,800

Caring Customers and Vendors:

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

Origami Art:

Katelyn Otani and friends make and sell beautiful origami sailboats in honor of her brother, Andrew and the LSA. Donations: Exceeds $200

Custom Photo Albums:

Jessica Hanson, Karen Denne and family design unique custom photo albums for sell during the 2008 conference. Proceeds: Exceeds $1,000

Holiday Donation from Palm Beach, FL Dispatchers:

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

Founders Grant:

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

Matching Employee Donation:

Sun Life Financial, Wellesley Hills, MA matched donations made on behalf of employee, Jennie Diamantopoulou (and family). Total multi-year matching donations: $3,125

Independent Representatives Join Forces:

Sarina Myers joined forces with representatives from Mary Kay, Pampered Chef & Tupperware to raise money for the LSA. Total multi-year proceeds: Exceeds $500

Sixth Grade Students Honors Teacher:

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

Foundation Donation:

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

2nd Annual Walk-a-Thon:

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.

Anheuser Busch, Inc. Carterville, GA:

Paul Luken contacted his employer, Anheuser Busch, Inc. and requested a donation for the 2006 conference. Donation: $500

Holiday Party Giving Thanks!:

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

Kindness from a Stranger:

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

Graduation Gifts:

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

A Gift of Love:

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”.

Blue Mountain Arts:

On behalf of Maria Williams, Blue Mountain Arts Community Cares Programs, Boulder, CO awards a grant to the LSA. Grant: $500

Wal-Mart Foundation:

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

Caribou Coffee Company:

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

Law Firm Donation:

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

Local Merchants Support LSA Cause:

Karen Avila, family and friends solicit local business to raise money in support of LSA during conference years. Multi-year donations: Exceeds $10,000

T-shirt Sales:

Caroline and Lou Carrillo from Oak Lawn, Illinois donated LSA designed T-shirts to sell during conferences. Total multi-year proceeds: $3,100

Matching Corporate Donation:

Employees Community Fund of the Boeing Company on behalf of Judy and Mark Rodgers, Seattle WA. Matching donation: Total matching donations: Exceeds $5,500

An Evening of Love and Remembrance:

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.

Birthday Celebration:

Margaret Cope celebrated her 60 th birthday by donating her gifts to the LSA research fund. Total Gifts: $1,871.

1st Multi-State Walk-a-Thon:

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.

Working at the Car Wash:

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

Loving Cousin:

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

LSA’s First Car Donation:

Sally McSpadden of Kentucky donates car to raise funds for LSA. Proceeds: $365

J.M.A Electric Inc.:

On behalf of Karen & Elio Avila, Belle Glade, Fl. Donation: $500

Casual Day for a Cause:

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

Delectable Cornish Pasties:

Jessica Hanson, Family and Friends held a Pasty Sale in honor of son, Basel benefiting Lowe syndrome research. Total multi-year proceeds: $3,500

Allstate Insurance Awards:

Debbie Jacobs contacted the Allstate Foundation through her agent and the LSA received a grant donation for her volunteerism. Total Grant: $500

Keeneland Foundation Awards Grant:

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

Community Donations:

Expressions, Youth Ministry of Victory Harvest Church, Baton Rouge, LA Donation: $250

Vodaci Technologies, Inc. Employees, Des Moines, IA, Donation: $100

Company Match Program:

American Express matched a donation made by LSA member, Jackie Fletcher-Gill. Match Donation: $100

Matching Employee Donation:

BEA Systems/Oracle Redwood City, CA on behalf of employee, Jeff Smith matches gifts. Total multi-year donation: Exceed $3,800 2005 & 2006

LSA Receives Research Grants:

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

HBSR Company Collection:

Lisa Jensen of Dracut, Massachusetts organized a collection among friends and employees in honor of Brian DeFelice. Proceeds: $1,850

Nikban Benefit Luncheon:

Marguerite Chatigny, friends and staff at the Diocese of Oakland, California sponsored a luncheon in honor of Joey Nikban. Proceeds: $265

Matching Corporate Gifts:

Verizon Matching Gift: $1,500 and American Express Matching Gift: $200

Company Donation:

PRV Electronics: $50

Corporation Produces LSA Color Brochure:

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.

Orinda, CA Fundraiser Auction Benefit:

Heidi Nikban and family organized an auction fundraiser event, which also included fun activities. Proceeds: $622

Bulter Wick Trust CO., Home Savings, OH.

Donation: $500

Corporate Donation:

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

Cartridge for Kids:

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 and Friends Skate for the LSA:

LSA Dad, Jack Smith and his friends skateboarded and traveled 3,000 miles for LSA medical research. Proceeds: $14,000.

New York Bar Fundraiser:

Terry Thelen, friend of LSA members Cori and Vinny DeGori organized the event. Proceeds: $800.

Favorite Charity:

Employees at the Home Savings Bank in Youngstown, Ohio voted the LSA its favorite charity and contributed $500.

Sale of Glass Beads:

LSA parent Tina Driggers with the assistance of a jewelry artisan friend sold custom designed glass beads to benefit LSA. Proceeds: $258

Massachusetts Medical Society/New England Journal of Medicine:

Donation: $1,000

Service Roofing & Sheet Metal, NC donation

Service Roofing & Sheet Metal, NC donated to the LSA in honor of the Richardson Family, Mike, June & Michael. Multi-year donations: Exceed $2,500

Comedy Nights and Dinner Dancing Special Events:

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.

600-Mile Walk:

Ann Keefer, LSA Board member and Treasurer, walked 600 miles for her nephew, Larry Barnett and the LSA. Proceeds: $40,000

Marathon Runner Raises Funds:

Gill Hill, England ran in a marathon to raise money for the LSA. Proceeds: $300

Dental Clinic Collects Donations:

Employees at “Aesthetics in Dentistry” in Toronto, Ontario collected donations during the holiday season. Proceeds: $400

Corporate Matching Gift:

American Express Foundation matched a parent donation. Matching Gift: $50

Corporate Donation:

Dura/Elan Pharmaceuticals. Donation: $100

Anonymous Gift:

A special gift in support of the NIH Research Appreciation Dinner. Donation: $700

Miracle Day:

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.

Family Hot Dog Stand:

The Ervin Family in Georgia sponsored this event. Proceeds: $325

Dinner Dance:

Theresa and Paul Kennedy of Louisiana held this event at the Baton Rouge FOP Hall. Proceeds: $1,350.

Caring Customers and Vendors:

Barry Reynolds of Ireland created a flyer about his son and circulated it among his company’s customers and suppliers. Proceeds: $7,700.

Bake & Craft Sale:

Brenda Balek of Iowa organized this event at the fairgrounds. Proceeds: $1,200

Company Holiday Gift:

Nicole Simoes of New Jersey suggested to her company that the annual holiday charity donation go to the LSA. Proceeds: $2,000

Company Donations:

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

Corporate Foundation Gift:

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.

Corporate Donation:

Ben Knight approached his company Millennium Pharmaceuticals, Cambridge, MA for a non-profit charity grant donation. Grant $500

Corporate & Company Donations:

British Airlines, Donation: $500

The Daughters of Isabella’s, KS: Donation: $100

Duke Energy: Matching Gift: $50

Wedding Anniversary:

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

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.

Corporate Donation:

Jane Montenero approached the Delta Airlines charity committee and was given a great donation. Donation: $200

2-Man All Ball Tournaments:

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

Haircut-a-thon:

Jane Montenero of Massachusetts organized a benefit haircut-a-thon at the salon where she works. Proceeds: $2,900

Fishing Derby:

Allyn Krauth of California helped to organize the Hollister Rod & Reel Club’s annual Fishing Derby. Proceeds: $1,200

Indianapolis 500 Booth:

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

T-Shirt Sales:

Patty and Rick Steinman of Illinois purchased and designed 100 LSA t-shirts, which were sold to members. Proceeds: $1,200

Benefit Basketball Game:

Sam Gattlieb of West Virginia helped to organize a benefit basketball game between local TV and radio stations. Proceeds: $100