Lupus Alliance of Upstate New York

LUPUSWALK.org ended last night, but several people have requested another day or two to finish collecting donations. Therefore, the cutoff for online donations has been extended to Monday morning. That will be the hard cutoff for the walk. Donations outside of the walk will still be possible on LAUNY’s website and via mail. During this very difficult time and always, LAUNY needs and appreciates your support.

The Lupus Alliance of Upstate New York mourns with you when you lose a loved one. LAUNY also provides a meaningful way to express your love through a gift that supports ongoing programs for our lupus community. On Sunday, August 30, a tribute gift was received in memory of Patricia Asarese. May those who mourn her passing find comfort in their memories of her. Memorials and celebratory gifts may be made at www.lupusupstateny.org/donate.

Following a LAUNY meeting for Lupus warriors and families, the Mom of an adult warrior was inconsolable. During the meeting she gained understanding about the pain and hurdles her daughter was facing. She couldn’t control her tears, because she felt she’d let her daughter down. If you are a loved one, listen with all of your heart. If you are a warrior, be patient with others who can’t possibly understand your journey, while you take care of yourself. The Lupus Alliance of Upstate New York provides educational materials, videos, daily messages of inspiration, and a community in which we can all grow together. Please support these programs at lupusupstateny.org. We need you.

The Lupus Alliance of Upstate New York distributes information about lupus and related conditions for free at public health events and through request fulfillment. It isn’t enough to support those who know they have lupus. We must help people who don’t yet know what is hurting them to recognize the seemingly unrelated symptoms and advocate for themselves. An average of six years is too long to wait to be diagnosed with lupus! Help shorten the distance between symptom and diagnosis by donating to lupusupstateny.org today.

Three days left to contribute to LUPUSWALK.org and support the programs that educate, empower, and provide reassurance to our Lupus family. We simply cannot continue without your support. LAUNY’s programs are free to Lupus warriors, loved ones, and caregivers, because those we serve don’t need any more barriers to a healthy, fulfilling life. Please donate today. The virtual walk ends at midnight on 7/31. Thank you.

1 in 3 Lupus warriors have multiple autoimmune diseases, which complicates diagnosis and treatment. Many see 5 or more doctors, each focusing on their own specialty. Tracking all of their appointments, lab work, meds, reactions, and symptom changes can be overwhelming, especially while fighting chronic illness. Although the coordination of treatments is critical between all doctors, some doctors simply don’t take the time. The Lupus Alliance of Upstate New York provides programs on self-advocacy and lists of physicians by county. Please support these essential services by donating at lupusupstateny.org.

Lupus warriors and their doctors rarely have time to share all the information that is essential for achieving the best possible health outcomes. In late winter 2019 at a LAUNY Introduction to Lupus meeting in Chautauqua County, the importance of eye exams and the potential risk of some medications that are prescribed to manage lupus symptoms were discussed. An attendee was alarmed that she’d recently been prescribed one such medicine, saying she’d already struggled with serious eye problems for years. In that meeting, she learned of an increased risk to her eye health and the importance of sharing all medical information with her rheumatologist. The Lupus Alliance of Upstate New York helps fill critical information gaps regarding lupus and related autoimmune diseases. Please support these programs at lupusupstateny.org.

EIGHT days left to donate to LUPUSWALK.org. Please support the only grassroots organization that provides free, accessible programs to lupus warriors, loved ones, and caregivers in 33 counties.

LAUNY finds itself operating on minimal resources due to the effect of COVID on the economy and our normal fundraising activities. LAUNY NEEDS YOU now more than ever. Read our Newsletter for more details:

LAUNY DOES NOT TOLERATE RACISM. The Lupus Alliance of Upstate New York is deeply, morally enraged by people and practices that deny equal rights and opportunities for all people. While George Floyd is the reason we march today, it would be a sin of omission to disregard the lives of countless others whose lives have been cut short by systemic racism. Still, we acknowledge that it is George Floyd’s death that brought us to this long overdue, no-going-back moment. LAUNY does n...ot tolerate racism. It has no place in our programs, governance, or funding. Racism has no place in our society. The word itself has but one appropriate use in our language and that is to inform the principles that abolish racism in every form and to establish consequences for any who violate those principles. As a health education organization, we are witness to the suffering caused by an inconsistent and biased healthcare system. In spite of significant medical advancements made over the past century, lupus has largely been ignored. To this day, it takes an average of six years just to be diagnosed. What has this to do with racism? Lupus is a disease that disproportionately affects people of color. BIPOC individuals (Black, Indigenous, People of Color) are two to three times more likely to have lupus, display symptoms at a younger age, are more likely to suffer multiple autoimmune conditions, and have shorter life expectancy. These are conditions of the disease as experienced by the BIPOC community. And those conditions are tragically exacerbated by the inequities of our society poverty and restricted access to education, nutrition, and adequate health care. The Lupus Alliance of Upstate New York will continue to serve all who are affected by lupus and related autoimmune diseases, through inclusion and collaboration, in all matters of service, governance, and advocacy. Join us. Yours in solidarity.

Check out this month's Lupus Education & Advocacy Network video for valuable information presented by two eye experts- Dr. Bucilli, a General Ophthalmologist, and Dr. Notaro-Rietz, a Retinal Specialist.

You don’t have to walk. First and foremost, we want you to be safe. There are many ways to engage your group virtually. We have a page full of ideas. Do you have an idea we haven't thought of? Share it!

Remember: Don't raise money with a Facebook Donate Button. Please advise all team members that, if they use a Facebook donate button, the funds they raise will not be credited to them or to your team. Those funds come through as anonymous donations and we have no way to know who raised them. Please register all your fundraisers here: http://www.lupusupstateny.org/walk