WNY Lupus Walk 2017: A High Energy Event!

WNY’s Lupus Walk 2017 was as high-energy amazing time,  due to the commitment of many. A huge thank you goes out to our walk committee - Allison Carr, Janell Van Cleve, Vickie Bomaster, Pauline Ziatts, and Michael Weber – who began meeting early on to ensure all aspects of the walk were properly developed. From volunteer recruitment and sponsorships, to food and basket donations, entertainment, and so on, there are many moving parts to a walk and they worked hard to meet each one of LAUNY’s goals for this year’s walk.

As for entertainment, in addition to John Barry, our wonderful DJ, and La’Movement Dance & Fitness, who got us warmed up before the walk, we were joined (invaded?) by Star Wars heroes from the 501st Legion and Rebel Legion, who walked, danced and even hula hooped with us. Each one of you contributed so much to the experience and we hope each of you will be returning for future lupus events.

Of course, the goal of the walk is to raise awareness and program funding. This year, we were joined by an astounding number of new walkers, new teams, and new donors. More than 500 people walked and more than 260 of those walkers were first-timers. Of the 50 teams who registered, 30 were new. And, so far, Lupus Walk 2017 has received than 944 donations, an increase of nearly 45% over last year. These numbers indicate a strong surge in community engagement and we are excited about what this means for the lupus community.

Finally, it is the walkers and volunteers who provide the spirit and reason for this event year after year. As one walker put it, “It means a lot having so much support. It makes battling this disease that much easier knowing how much support we all haveYou did an AMAZING JOB!”

Photos will appear below in a slideshow. This may take a moment to load! 

Self-Administered Benlysta Receives FDA Approval

Benlysta is the first drug approved specifically for lupus in over fifty years. It is a treatment option that has benefited many individuals with this autoimmune disease. However, many others have found it expensive or inaccessible, as it requires delivery through regular infusions. 

The FDA took huge strides in making the treatment accessible to more patients today, approving a self-administered injectable that can be performed at home. The new version of the medication will reach certain pharmacies in the U.S. in August of this year.

Not all lupus patients require or benefit from this treatment; only your doctor can tell you if Benlysta is the right treatment option for you. The Lupus Alliance of Upstate New York applauds the efforts of researchers and regulators to make more treatment options available to those with lupus. For too long, lupus patients have relied on drugs developed for other conditions, lacking new options that address the specific needs of the lupus community. 

Remembering Illumination 2017

During Lupus Awareness Month, we gathered to celebrate a year of learning, advocacy and growth. The purpose was to elevate the conversation about lupus, while honoring the champions who helped us accomplish so much during the past year.

Illumination, the first event of its kind in our region, welcomed government, legal and medical professionals, corporate and community leaders, donors and volunteers. We honored five individuals with LEAN Forward Awards, each for their exemplary service on behalf of the lupus community.

The awards were named after the LAUNY program that is taking the support group concept to a higher level of empowerment. Each LEAN Forward community is committed to learning, sharing and thriving together beyond and in spite of lupus. Our honorees contributed to that same goal.

Our deepest gratitude goes out to APIC, Townesquare Media, and Lakeward Spirits as significant sponsors of the event and to many others who made this celebration possible. Many thanks to Andrea Wenglowskyj, the talented photographer who captured memories of the event.

WNY Presents LEAN Forward Award

On Saturday, May 20th, five individuals were honored as recipients of the Lupus Alliance of UNY’s LEAN Forward Award, for exemplary service on behalf of the lupus community.

Assembly member Crystal Peoples-Stokes was recognized for her leadership in Albany, particularly as sponsor of legislation that increases education and improves outcomes for those with lupus and their families.

Kathleen Arntsen, President & CEO of Lupus & Allied Diseases Association, was recognized for her tireless work fostering collaboration among all stakeholders and promoting innovative advocacy, awareness and biomedical research program initiatives on behalf of those impacted by lupus and conditions of unmet need.

Pauline Ziatts is a long-time LAUNY volunteer who demonstrates extraordinary measures of care in every task she assumes for the organization. She received this award for being an extraordinary communicator, listener, information gatherer, care-giver, cheerleader, and manager of details.

GEICO was recognized for the company’s incredible financial support, in-house health fairs that provide access to important information to employees, and for their encouragement of GEICO employees to serve as volunteers and otherwise support our organization.

Dr. Michael Cummings, Vice Chair of Community Affairs and Outreach for the Department of Psychiatry of the University at Buffalo, Associate Medical Director of Erie County Medical Center and Medical Director of NY-START, is an exemplary trainer, elevating the experience and outcomes of each program he delivers. His primary focus is on developing and integrating systems of care for individuals with mental illness and developmental disabilities. He was recognized for being an esteemed advisor and a mission champion for the lupus community.

Each honoree has contributed significantly to the quality of life and accessibility of care for those whom we serve and we are deeply grateful for their service.





Share Your Voice on Lupus Drug Development

Lupus advocacy groups from around the country have coordinated to create a project called Lupus: Patient Voices. This is an unprecedented opportunity to share your experience of daily life with lupus. In particular, you'll have the chance to share input to help inform the FDA's future decisions about lupus treatments. The broader initiative, which is called the Lupus Patient-Focused Drug Development, seeks to accelerate the development of effective treatment options. 

There are two ways to make your voice heard: 

  1. Participate in an online survey, either as a person with lupus or a parent of a child with lupus. Share your story and experience, to help shape the future of lupus therapies. 
  2. Join advocates from around the country for a national meeting in Washington, DC on September 25th. There will be many opportunities to share your voice, including patient panels, comment periods, and discussions. 

Join a national network of advocates, chaired by the Lupus and Allied Diseases Association.

For more information, please visit  https://lupuspfdd.org. 

What will you do during Lupus Awareness Month?

May is officially Lupus Awareness Month, but we at the Lupus Alliance of Upstate New York (LAUNY) think every month should be, because those affected by this disease never get to set it aside to make room on their calendars for other things. 

Over the past twelve months, LAUNY has introduced new programs and events, collaborated with new partners, and expanded its service area, all in order to educate, comfort and empower those affected by lupus and related autoimmune diseases. We have learned a great deal and have much to celebrate, but there is much more to be done. Will you help?

May 3rd, Lupus Advocacy Day in Albany. LAUNY will join other lupus agencies in encouraging the passing of legislature on behalf of the lupus community. Learn more and add your voice.

May 7th, Rocking Benefit Concert by 1916 at Flour City Station. Join the fun and help raise funds for programs in support of those with lupus in Greater Rochester and the Genesee Valley region. 

May 9th, Charity of Honor at Saratoga Inn. Stop by for dinner or drinks between 4 pm and 5 pm in Saratoga Springs and 20% of your tab will be donated to LAUNY for programs in the Northeast New York region.

May 10th, Lupus Awareness Day. Look for monuments and buildings bathed in purple light to bring lupus awareness to communities across Upstate New York.

May 20th, Illumination - an event to elevate the conversation about lupus. LAUNY will celebrate new programs and honor those who've helped us achieve so much during the past year. 

Join us, if you can. Donate, if you will. Volunteer, if you're able. Advocate, always. Together we will make a difference for all who suffer with lupus!


NENY & CNY Walk Photos Tell the Story

The capacity of a community to come together for a specific cause, particularly a cause that receives little media coverage and is widely misunderstood, is both astounding and uplifting. The Northeast and Central New York communities came together on March 19th and April 2nd, respectively, at each region’s 10thannual Walk to Shine the Light on Lupus. The Northeast New York region beat their goal of $15,000 by $3,083 for a total of $18,083. The Central New York region raised $16,000 so far and funds are still being received. The photos taken by our generous photographers tell the story better than I ever could. Take a look (click on the folders) and, please, let them know how much you appreciate their participation!

Tom Bryant – Ph3photography@gmail.com

Tracey Fontanella – Trayseephoto@yahoo.com 
Andrew Reed – Bigdrewsphoto@gmail.com

Special thanks to Janet Rucki, NENY Walk Chair and Deana Fellows and Laurie Burton, CNY Co-chairs, and to all of the amazing volunteers who made each event possible. As always, we learned a lot at these events and we’re already working on creating more smiles and engaging more people next year. If you’d like to participate in the planning or if you have a suggestion, please let us know at info@lupusupstateny.org.

NENY Walk 2017 Photo Gallery

CNY Walk 2017 Photo Gallery



Henninger HS purple out for Lupus

Henninger High School in Syracuse raising awareness about Lupus while celebrating Senior Night on Friday, February 10th. As the JV and Varsity basketball teams take on West Genesee High School (5:30 pm and 7:00 pm respectively), students and supporters will have access to free educational and informational materials from LAUNY. They will also have the opportunity to support the organization by purchasing purple wristbands and boxes of gourmet chocolate for Valentine's Day. All funds raised will help provide free programs and services to the Central New York Lupus community. Thanks, Henninger High School!