During the year the Lupus Alliance of Long Island/Queens sends out several press releases and public service announcements covering everything from the latest in lupus research news and drug development to our fundraising events, educational seminars, awareness programs and more.
If you are a journalist interested in covering lupus, looking for an interview, speakers, quotes or more please contact:
Director of Programs and Media
Lupus Alliance of LIQ
Programs Available to Help Support Those Living with Lupus
The Lupus Alliance of Long Island/Queens has been helping those with lupus in the Long Island/Queens communities since 1955. With a steadfast mission, of improving the lives of those living with lupus through awareness, education, support services and research and the Alliance has continually been the only local resource for families whose lives have been affected by lupus.
In following that mission, the Lupus Alliance of LIQ offers several support groups in varying locations throughout Long Island and Queens to help those who not only are already living with this life-threatening disease but also those who are newly diagnosed and need information, support and a comforting hand.
Support groups meet once a month on Tuesday evenings and are located at St. Catherine of Sienna in Suffolk, Plainview Hospital in Nassau, NSLIJ Forest Hills Hospital in Queens and a new daytime group is now being offered on the last Wednesday of the month at the LALIQ office in Bellmore.
Kristin, an attendee of the LALIQ support groups stated, “No one understands lupus quite like another person who has it. It has been great to meet others through the LALIQ support groups and learn how they cope with this disease on a day to day basis.”
The LALIQ Support groups are free of charge and are led by trained volunteer facilitators who understand the difficulties that are faced by those who live with lupus every day. Those with lupus, family, and even friends are welcome to attend any of the groups. To view a full schedule of topics and locations, or to register for a group please visit www.lupusliqueens.org/programs/supportgroups.
To further reach out to those who are in need of support, the LALIQ has started a new program in 2016, the Lupus Friend program. The Lupus Friend Program aims to create, nurture and sustain an environment in which lupus patients can share their experience and knowledge by paring relatively experienced patients with relatively new ones, becoming “lupus friends.”
This free program will strive to match “friends” with a compatible partner who can spend time speaking to them on the phone to offer support. Ideal candidates for this program include experienced patients who feel that others can benefit from their experience, newly diagnosed patients who feel they would benefit from the help of someone who has experience living with the disease. This program is designed for those who may not be able to get out to attend a support group or feel more comfortable sharing their experience and feelings one-on-one rather than in a group. To sign up for this program please visit www.lupusliqueens.org/programs/lupusfriends.
Help Someone with Lupus and Join the Lupus Alliance of LIQ for their 3rd Annual 5K Run for Lupus.
On Saturday, May 7th over 500 runners from across the state will join the Lupus Alliance of LIQ, WBAB, and Universal Testing for the 3rd Annual 5K Run for Lupus at Central Islip High School. The 5K Run is on a certified and sanctioned fast and flat course through a local neighborhood and professionally timed by Just Finish, Inc.
Early bird registration is $20pp if registered before April 9th. The first 400 runners are guaranteed a T-shirt, and awards will be given to the top overall runners as well as the top 3 in 14 age group categories. You can register by calling 516-783-3370 to request a form or register online at www.lupusliqueens.org/5krunforlupus3.
After the race you can enjoy refreshments, raffles and an award ceremony as well as the 7th Annual Central Islip High School Health and Wellness Fair which features yoga, open swim, demonstrations, hundreds of booths from local agencies and more.
Sponsorships are available for local businesses who want to show their neighbors that they care about those living in Nassau, Suffolk and Queens who have lupus; a chronic, life-threatening disease that has no cure. Sponsorship packages include logo and link on the LALIQ website, logos on route signs, logo on the t-shirts, and more. To become a sponsor please call 516-783-3370.
Every dollar raised at the run helps to serve the Long Island/Queens population that is affected by lupus. As the only local resource for those who live with lupus, the Lupus Alliance of Long Island/Queens has been a mainstay of support, knowledge and friendship since 1955. Offering support groups, phone counseling, kids group, financial assistance, college scholarships and educational seminars.
Kenneth Cox, is a Central Islip resident, chairperson of the 5K Run for Lupus Committee and husband of someone with lupus. He organized the run to not only raise money to help those like his wife who face living with lupus every day, but also to assist people in finding ways to cope with a chronic illness intruding on your life.
Ken stated, “My wife and I were married over 26 years ago. Within a year my wife began to complain of joint pain and achiness, and was diagnosed with lupus a few months later. Having a loved one with Lupus can be extremely stressful but for me I found solace in running and the sport helped me to get through everything that we’ve had to face with lupus so far. I hope everyone will join us on May 7th for this fun, family event.”
Join the Lupus Alliance of LIQ at Their 22nd Annual Walk-Along for Lupus!
Bellmore, NY – On Sunday, October 18th over 2500 people will join the Lupus Alliance of LIQ, WBAB, News 12, Freeport High School`s Marching Band and Bethpage Federal Credit Union for the 22nd Annual Walk-Along for Lupus at Eisenhower Park, Field #6. This fun family day includes breakfast, lunch, face painting, live music, give-a-ways and more.
To register or make a donation, please visit www.lupusliqueens.org/walkalong22 or call 516.783.3370 to request a donation envelope. Local businesses can form a corporate team and earn great prizes including; a framed team picture, route signs with their logo, a pizza party for the office and more. Family and School Teams can earn team signs and pre-packaged lunches. Individual walkers can earn Visa gift cards if they raise over $500. All walkers who raise over $50 receive a Walk-Along for Lupus T-Shirt.
Sponsorships are available for local businesses who want to show their neighbors that they care about those living in Nassau, Suffolk and Queens who live with lupus; a chronic, life-threatening disease that has no cure. Sponsorship packages include logo and link on the LALIQ website, logo on the walk t-shirts, signs at the event and more.
Every dollar raised at the walk helps to serve the Long Island/Queens population that is affected by lupus. As the only local resource for those who live with lupus, the Lupus Alliance of Long Island/Queens has been a mainstay of support, knowledge and friendship since 1955.
This is a very exciting time for the Lupus Alliance of LIQ and the people they serve, as it is for the organizations new Executive Director, Patricia D`Accolti. Together, they look forward to building new connections and advancing their reach across the area. Your donation to the walk will help start new support programs and assist those living with the disease with financial assistance for medical bills, education, kids’ services and more. Visit www.lupusliqueens.org/walkalong22 and join Long Island`s largest and most successful lupus walk.
Create a design that makes a difference, enter the “Emerge from the Cocoon of Lupus Jewelry Design Contest”
Those who live with the incurable autoimmune disease of lupus have long seen the butterfly as its unofficial symbol. The metaphor of striving to break free from the cocoon that encompasses you and emerging anew is close to the hearts of those living with lupus and its debilitating effects every day of their lives. The Lupus Alliance of LIQ, a local 501c3 non-profit, strives to help those living with lupus successfully emerge from that cocoon by offering support, empowerment, and knowledge through the programs they offer. The LALIQ also focuses on awareness; and spreading knowledge through the programs they offer.
To help spread the cause, the Lupus Alliance of LIQ is looking for creative people to design a piece of fine jewelry. The winning designer will work with Esther Ambalu, owner of Ambalu Jewelers in East Hills, to create a limited edition necklace which will be unveiled at a cocktail reception hosted by Ambalu Jewelry on September 17th, 2015. The piece will also debut at the 22nd Annual Walk-Along for Lupus at Eisenhower Park on Sunday, October 18th. The contest winner and their design will be featured on the Lupus Alliance of LIQ’s website and Facebook page. 40% of the net proceeds will benefit LALIQ and the people they serve in the Nassau/Suffolk/Queens communities.
The Lupus Alliance of LIQ is looking for a design that embodies the spirit of their mission, “Improving the lives of those living with lupus through awareness, education, support services and research.” When creating your design try to incorporate butterflies (the symbol of lupus), the color purple or orange (the colors of lupus) and the LALIQ’s support group theme, “Emerge from the Cocoon of Lupus.”
Executive Director, Patricia D’Accolti, stated “It is an honor to be working with Ambalu Jewelers on its campaign, knowing they share the same sentiment as the LALIQ of giving back to and serving our own community right here on Long Island.” LALIQ is the only organization located on the Island and serves its lupus community here by providing grants, scholarships, education, advocacy, support and of course research.
Anyone with a passion for design and/or a passion for spreading awareness about Lupus is eligible to participate! To submit your design, visit www.LupusLIQueens.org/ambalucontest and download the design entry form. All submissions must be received by August 7, 2015. You can e-mail your design to: email@example.com or mail them to: The Lupus Alliance of LIQ, Attn: Lupus Design Contest, 2255 Centre Ave., Bellmore, NY 11710. Be sure to include the signed design contest application or you will not be eligible to participate. The winner will receive a complimentary piece of their own creation from Ambalu Jewelers Let your creative juices flow, empower yourself with the idea that your design could help someone emerge from the cocoon of lupus and enter today!
The Lupus Alliance of LIQ has Proudly Donated over $550,000 to Further Novel Research into the Cause and Cure of Lupus.
Bellmore, NY – The Lupus Alliance of Long Island/Queens, founded in 1975 has always focused on two aspects of service to the lupus community; programs and research. These two platforms form the LALIQ`s mission, “Improving the lives of those living with lupus through awareness, education, support services and research.”
Lupus, is a chronic, life-threatening autoimmune disease that has no known cure and affects over 1.5 million Americans. Research into diagnostic testing, medications and a cure are vitally important to help those living with this often devastating and life changing disease to improve the quality of their life.
Over the past 15 years, the Lupus Alliance of LIQ has chosen the Lupus Research Institute to be the recipient of their research dollars due to their focus on funding grants that use novel, out of the box thinking. The LALIQ has donated over $550,000 to the LRI to help fund research grants that have helped pave the way for new testing and new medications for lupus.
LALIQ Executive Director Patricia D`Accolti stated, “This contribution is significant for us in that we are a small local organization. Our community right here in Nassau, Suffolk and Queens genuinely cares about all aspects of our mission.”
The Walk-Along for Lupus, now in its 22nd year is the main funding source for these research donations. Raising over $225,000 annually, the walk, supported mainly by those living with lupus and their families, has helped further research into lupus more than any other fundraising event on Long Island.
The Lupus Alliance of LIQ is extremely proud of their connection to those living with lupus in Nassau, Suffolk and Queens, who come out year after year to support the walk. These individuals, some of whom are being treated with chemotherapy for their lupus, show up at Eisenhower Park before the sun rises with teams made up of family and friends to help raise money for research and services. Their dedication is what keeps the board and staff at the Lupus Alliance of LIQ striving ahead to create new support programs and donate more funding into research every year.
LRI President and CEO Margaret G. Dowd expressed deep appreciation for the continued commitment. “The Lupus Research Institute thanks the Lupus Alliance of Long Island/Queens for its years of dedicated support that has helped fund many of the nation’s most novel and innovative discoveries in lupus and autoimmune disease.”
Emerge From the Cocoon of Lupus
The Lupus Alliance of Long Island/Queens was founded by Doris Shaer in 1975 to provide advocacy, education, funding and support to those living with Lupus on Long Island. As someone living with lupus, her goal was to reach out and help others while creating a network of members in the Lupus community at the LALIQ. As the founder, and very first Executive Director, Doris’ admirable mission serves as the foundation of what the Lupus Alliance of Long Island Queens today is all about. Following in its founders footsteps, the new Executive Director of the Lupus Alliance of LIQ, Patricia D`Accolti has made restructuring and reinvigorating the LALIQ support groups her top priority.
Impassioned by the mission of the LALIQ, Patricia stated, “Living with Lupus, a chronic and deadly disease is difficult to manage without support. Often those affected by Lupus are inundated with doctor’s visits, hospital stays, excessive medical bills and a multitude of unique issues. This culmination has the ability to take an emotional toll on our members. I have listened to our member’s needs and how we can best serve them. Therefore, providing the best possible support groups to let them know we are here to help is of the most importance.”
The LALIQ’s new support groups, “Emerge from the Cocoon of Lupus” are a topic based program open to anyone with lupus, family members and caregivers. Attendees will have the opportunity to share their experience, strength and hope in a safe environment where their thoughts and feelings will be kept in confidence. This warm and inviting program offers those who can only understand best what it’s like to live with Lupus a non-judgmental and supportive reprieve from the worries that often accompany the disease. Some meetings will also include experts who speak on Lupus related topics. For example, the August meetings will welcome Ilene Corrina of Pulse NY to discuss “being your own advocate when in the hospital”. The LALIQ is also proud to offer at its September meeting, expert on disability benefits, attorney Jared Rada to discuss “applying for disability as a Lupus patient”. Topics change monthly and there are even meetings where the LALIQ will be offering give ways such a sunscreen specifically targeted to Lupus patients.
The support groups are conveniently located in all three counties that the LALIQ serves. Please visit the website at www.laliq.org for information on meeting topics, dates and times.
The Lupus Alliance of Long Island/Queens Names Patricia D`Accolti Executive Director
Bellmore, NY – The Lupus Alliance of LIQ located in Bellmore, New York, serving the lupus community in Nassau, Suffolk and Queens since 1955, has announced the selection of Patricia D`Accolti as its new Executive Director. D`Accolti filled the vacancy in March of 2015. The selection was made after an extensive Tri-State area search and selection process, during which D`Accolti served as Founder and Executive Director of Children`s Sport connection in Garden City.
“We are very pleased to announce this appointment, “reported Patrick Geraghty, President of the Board of Directors at the Lupus Alliance of LIQ. “Patricia will bring leadership and creativity to the agency`s programs and a deep sense of commitment to the Long Island/Queens lupus community. She has served nonprofits at all program, fundraising, executive and leadership levels and has a breadth of perspective and experience.”
A respected professional and leader on Long Island, in her role as Executive Director of Children`s Sport Connection, Patricia utilized her leadership ability to recruit many prominent members of the Long Island business community as well as influential members of the Long Island media and elected officials to further CSC`s worthy goals. Prior to founding CSC, she was fortunate to experience success as the Vice President and Co-Owner of a family business for the than 15 years. During that time, Patricia volunteered much of her free time to serve as an independent child advocate.
Patricia is a graduate from the School of Psychology at LIU CW Post, where she served as a Board member of the Alumni Association for seven years. She also holds a certificate from Molloy College for completion in coursework in related areas. Patricia has been honored to have been invited to speak at the C.W. Post Women of Achievement Dinner as their keynote speaker. She has also lectured at Nassau and Suffolk Community Colleges, Nassau County Supreme Courthouse, Nassau County District Attorney`s office, the Suffolk County bar Association, to name a few.
Patricia has received a certificate of appreciation from the office of the Nassau County District Attorney, Kathleen Rice, for partnering with the Project Safe Neighborhood team. She also created a program called, “Giving to Learn” utilized by Nassau County executive and District Attorney`s office. The program teaches young athletes and students professional skills and enhances character building traits through utilizing community service programs. She has received merit citations for her service from Nassau County Executive Tom Suozzi and Ed Mangano, Town Supervisors Kate Murray, John Venditto and Jon Kaiman and has received numerous acknowledgments including Community Champion by Newsday, One of Fortune 52`s Women of Achievement and inducted into the Long Island volunteer Hall of Fame. Most recently she was honored by ACLD, the recipient of a Humanitarian award for her work with the health agency.
“The Lupus Alliance of LIQ plays a vital role in providing support and advocacy for those whose lives are touched by lupus. It is the only agency devoted to assisting this population`s needs in the Nassau, Suffolk and Queens area,” said D’Accolti. “I am dedicated to working along with the Board of Directors, the LIQ staff and community members to improve the quality of life of those affected by this chronic disease.”
The Lupus Alliance of LIQ is a 501 (c) (3) nonprofit organization whose mission is to improve the lives of those living with lupus through awareness, education, support services and research.
If you Have Lupus and Need Support Join the Lupus Alliance of Long Island/Queens New Support Group Program and “Emerge From the Cocoon of Lupus”
Bellmore, NY – The Lupus Alliance of LI/Q has been helping those who have lupus in the Long Island/Queens area since 1955. The mission of the LALIQ is to “Improve the lives of those living with lupus through awareness, education, support services and research.” The LALIQ is thrilled to unveil their new, “Emerge from the Cocoon of Lupus” support group program.
“Emerge from the Cocoon of Lupus” follows a simple but powerful premise, Experience, Strength and Hope. Each meeting will have specific topics; many will have knowledgeable guest speakers and several will have helpful give-a-ways such as chemical free make-up and sunscreen; both helpful products for those living with lupus.
The LALIQ support groups are open to those with lupus, their spouses and children (18 and over) as well as significant others and care givers. The groups, designed to be educational, positive, interactive and fun, will provide people with lupus and their families an opportunity to share their experiences with those who can understand and identify with them.
The groups welcome those with lupus who are feeling good, coping well, or living successfully with lupus. Come and share your story with others, let them see there is hope for a full enjoyable life with lupus. The groups will offer new information and new perspectives on how to live well with lupus, while offering an open and safe environment for members to express their thoughts and feelings on living with the disease.
The LALIQ support groups have new convenient locations. In Nassau, meetings will be held at Plainview Hospital 888 Old Country Rd, Plainview, Basement Lecture Room B, 7:30pm – 9:00pm, always on the third Tuesday of the month, staring April 21. Light refreshments and snacks will be served.
In Suffolk, the meetings will be held at St. Catherine of Sienna 48 Route 25A Smithtown, Lower Level, Medical Building, St. Vincent Conference room, 7:30pm – 9:00pm, always on the second Tuesday of the month.
In Queens, the meeting location and dates will be announced soon.
To register online or to view a full schedule of topics, dates and speakers please visit www.LALIQ.org or call 516-783-3370. The first new support group meeting will be in Nassau at Plainview Hospital on April 21st. To register please call 516-783-3370 or e-mail: firstname.lastname@example.org.
NYS LEGISLATURE PASSES RESOLUTION MEMORIALIZING GOVERNOR CUOMO TO PROCLAIM MAY 2014 AS LUPUS AWARENESS MONTH IN STATE OF NEW YORK. URGES CITIZENS TO LEARN ABOUT DISEASE SYMPTOMS
(Albany, NY, May 1, 2014) – The New York State Assembly and Senate have passed resolutions memorializing Governor Andrew Cuomo to proclaim May 2014 as Lupus Awareness Month in New York State. The legislature joins the Lupus Alliance of Long Island/Queens and other member s of the Lupus Agencies of New York State in their efforts to increase public awareness of lupus symptoms and health effects, and to increase support for lupus education and research programs. The Lupus Agencies of New York State have scheduled the Sixth Annual Lupus Awareness Day on May 7, 2014 at the State’s Capitol to call public attention to lupus—a disease that affects an estimated 105,400 New Yorkers, 1.5 million Americans, and 5 million people worldwide; often causing debilitating symptoms.
The Lupus Agencies of New York State are dedicated to improving the quality of life for individuals with lupus and their loved ones by providing education, support and outreach services, and promoting programs of awareness, advocacy, and research. Kathleen A. Arntsen, spokesperson for the Lupus Agencies of New York State stated, “We applaud Senator Joseph Griffo as the Prime Senate Sponsor of the Lupus Resolution and Assemblyman Anthony Brindisi as the Prime Assembly Sponsor of the Lupus Resolution and all of our legislative champions who passed this important resolution for the Sixth Annual Lupus Awareness Month in New York State. We are excited that this devastating disease is finally getting the recognition it deserves.”
Lupus is a chronic inflammatory autoimmune disease in which a triggering agent causes the immune system to attack the patient’s own tissue and can affect virtually any organ system of the body; including the skin, joints, kidney, brain, heart, lungs, blood and blood vessels. It is more common than AIDS, sickle-cell anemia, cerebral palsy, multiple sclerosis, and cystic fibrosis and there is no known cause or cure. Lupus is a leading cause of kidney disease, stroke and premature cardiovascular disease in young women and is unpredictable, highly individualized, debilitating and potentially fatal. Each year thousands of people are newly diagnosed with lupus, the great majority of whom are young people in the prime of their lives, and 90% of whom are women.
Lupus is more prevalent among African-Americans, Hispanics, Native Americans, and Asians and suffers from the lack of awareness more than any other major disease. Not only is the public knowledge of lupus lacking, but even health professionals can be unaware of the symptoms and effects of lupus, resulting in delayed diagnosis and proper medical intervention and demonstrating the urgent need for increased public and professional awareness of the symptoms of lupus. Early diagnosis and treatment are vital components in reducing the physical and economic impact of the disease.
The purpose of the 6th Annual Lupus Awareness Day is to help educate New York State’s elected policymakers, state agency officials, health care professionals, and the general public about the disease lupus and the need for research program support to develop better diagnostic tests and safer, more effective treatments; and ultimately, discover the cure to eradicate this devastating disease.
For more information about lupus, the Lupus Agencies of New York State or Lupus Awareness Day call 315-829-4272 or 516-783-3370.
The Lupus Alliance of LIQ was represented at the NY State Fair, as part of the Lupus Agencies of NY
Help Celebrate the 20th Anniversary Walk-Along for Lupus
The Lupus Alliance of LIQ, home of the Walk-Along for Lupus, Long Island`s first and longest running lupus walk, will hold their 20th Anniversary Walk-Along for Lupus on Sunday, October 20th, 2013 at Eisenhower Park, Field #6. Registration will begin at 8:30am and the walk begins at 10:00am, rain or shine. Click here to read the full press release
If you have Lupus, You Can Help Further Research into the Cause and Cure
The Lupus Alliance of LIQ, the only local resource for those living with lupus, will be working with SeraTrials, a local biotechnology company that partners with major Pharmaceutical and Diagnostic companies for the development of diagnostic assays and biological drug development. Click here to read the full press release.
Get Into The Loop and Learn about Lupus
May is Lupus Awareness Month and the Lupus Alliance of America of Long Island/Queens, the only local resource for those who have lupus and need help, is spreading awareness about this incurable disease. Click here to read the full press release.