It is officially autumn and I don’t know about you but I cannot believe we are almost half way through October already! The LFNC had a busy summer- with some Lupus Health Conferences, our 30th Annual Outrun Lupus 5K and welcoming new Board Members! We are finishing out 2024 with 3 more Lupus Health Conferences, including one in Spanish, this Saturday. Read all about it below! Recap: Summer EventsJust to catch you up on our summer happenings- in July we had the honor of hearing from lupus warrior Emmitt Henderson III as he told us his Lupus Nephritis journey and how to take care of your kidneys. He was followed by another wonderful lupus patient, Setareh Banisadr who discussed how to eat healthy for your kidneys. We also welcomed back Pharmacists, Drs. Benjamin Hinton and Osa Edogun. They covered the most recent and upcoming lupus medications and answered many questions. All of these videos are on our website for on demand viewing. We also celebrated our 30th Annual Outrun Lupus 5K on Sept. 21st. This is always a fun community event and we were thrilled to have so many of you join us in person. Thank you to everyone who attended, donated and helped us raise lupus awareness and $40,000! If you missed the event , be sure to watch our 2024 Outrun Lupus Honoree's speech to hear Giuliana's words of wisdom. Patients like Giuliana are why we at the Lupus Foundation of Northern California are here and passionate about our free patient programs. It is not too late to donate and help us continue our mission of Improving Lives Impacted by Lupus. You can watch our 2024 Honoree’s speech, look at the great photos from the event and you can still donate! Go to Outrunlupus.org. What’s Coming Up?!![]() Spanish Lupus Health Conference Our schedule is busy this Fall! If you or someone you know is a Spanish speaker be sure to share our Spanish Language Lupus Health Conference on Oct. 12th. This will be a free, virtual conference covering “Lupus & Mental Health” followed by “Establishing a support network: Tools and tips for lupus patients”. ![]() Holiday Lupus Health Conference We are happy to welcome back 2 of our favorite speakers for our pre-holiday Lupus Conference on November 9th. Sarah Goozee, PhD, and Setareh Banisadr will be discussing “Managing Stress during the Holidays” and “Healthy Food for the Holidays”. Registration is open now for this free, virtual event. ![]() Special Lupus Health Conference We are very excited to announce that we have teamed up with Lupus Of Southern California for our final Lupus Health Conference of 2024. Together we will be hosting a very special Conference with Dr. Amrie Grammer, founder of AMPEL Biosolutions and Dr. Martin Schneider, of Stanford University. They will be presenting a brief presentation each discussing a “New Test for lupus patients” and “The Value of your Health Data” they will each have an open Q&A session. Our Support Groups are continuing to meet virtually with a couple testing out meeting in person again! We know that many lupus patients are eager to see each other and have that in person connection and we are excited to have Support Group Leaders who are willing to be there for patients! The Sacramento Support Group is testing out a Hybrid Model, so be sure to check out where they are meeting on our website. The Auburn Support Group is back to meeting in person! If you live in the Auburn area you can join them on the 1st Wednesday of each month from 10 am- 12 pm, IN PERSON at Missions Coffee in Auburn. You can find all of our Support Groups here. Meet our New Board Members!![]() We would like to introduce you to our newest Board Members, Bill Rice (Treasurer) and Morrison Bruce. Bill Rice is our newest board member taking on the role of Treasurer, here is a bit about him, in his own words. “I am a finance professional with a background in treasury management and corporate real estate. I bring a wealth of experience to my role as Treasurer for the Lupus Foundation of Northern California. I hold both a Bachelor's and Master's degree in Finance, and currently manage the CapEx project portfolio for a multinational tech firm, focusing on strategic capital allocation and process improvements. My career has spanned industries including energy and computer storage, with expertise in foreign exchange risk management, cash forecasting, and investment policy compliance. I have previously overseen a $3 billion cash portfolio and served as a senior treasury consultant for multinational companies, driving process improvements in treasury operations. A proud veteran of the U.S. Air Force, where I specialized in satellite communications, I deeply value integrity, service before self, and excellence in every task. My treasury experience extends beyond my professional career; I have served as Treasurer for various nonprofits, including a local PTA and a career technical education foundation, managing operations and compliance with a focus on transparency and impact. I am committed to applying my financial expertise and systems-oriented perspective to help the Lupus Foundation of Northern California achieve its mission of improving the quality of life for those living with lupus. As a volunteer, I aim to ensure the foundation’s financial health and position it for long-term success. In my free time, I enjoy volunteering as a river guide with Environmental Travel Companions, running, cycling, and cooking with friends. I reside in Placerville, CA, with strong roots in San Jose, CA.” ![]() We are also excited to welcome Morrigan Bruce to our Board. She currently serves as the Chief Operating Officer for a local non-profit organization providing non-medical cancer support services to individuals and families in the Bay Area. Her personal experience of living with a chronic illness informs her personal and professional interests, guiding both her career focus and her educational pursuits. Throughout her non-profit career, Morrigan has supported clients seeking mental health services, crisis care, substance use disorder treatment, and medical care for acute and chronic health concerns. Morrigan currently holds an MPA with an emphasis in Nonprofit Management and is pursuing a master’s degree in Disability Studies. Welcome Bill and Morrigan! Thank you Jay Remley for your dedication to the LFNC The Lupus Foundation of Northern California announces that its longtime board member, Jay Remley, has resigned from the board. Jay is a passionate advocate for lupus warriors and served on LFNC’s board of directors from 2007 to 2024, including as its Chairman. Under Jay’s leadership LFNC significantly expanded its programs and digital presence. The LFNC team will miss Jay’s creativity and vision and wish him the best. Last ThoughtsAs we move into the last quarter of 2024 we want to take a moment to thank you all for your support. We are a small non-profit with a big mission and without your support, we could not continue our mission. In late Fall we will reach out to you again to introduce you to our 2025 Face of Lupus. You will have a chance to hear their story at our 10th Annual Purple Ribbon Awards on Saturday, March 15, 2025, which we have already begun planning! More details will be coming soon- and we hope you can join us to celebrate this incredible evening.
We are also trying to find some fun and unique ways in which you can support us- with the holidays coming up we will make your shopping a little bit easier and help support us at the same time!! So if you have a sweet tooth (or know someone who does) or like jewelry we are going to have something for everyone! We hope you have enjoyed reading this quarters Newsletter. If you were unable to attend our 30th Annual Outrun Lupus 5K this summer, we hope you will consider making a donation, perhaps even becoming a recurring donor. No matter the size, donations help us continue to offer our free Patient Programs and Services. As always, feel free to share this newsletter with friends or family. And if you aren't already, make sure you follow us on social media! Thank you!
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What a busy summer we have planned this year! In this Newsletter you will find information on our Summer Lupus Health Conferences, a fun new Family Event at Topgolf and how the planning is coming along for our 30th Annual Outrun Lupus 5k! ![]() VIRTUAL LUPUS HEALTH CONFERENCES We have 2 exciting Lupus Health Conferences planned in the month of July! The first is July 13th when we will hear from Emmitt Henderson III as he discusses “The Importance of Prioritizing Lupus & the Kidneys”. Emmitt has a remarkable story that you will not want to miss. We are happy to welcome back lupus patient and health coach, Setareh Banisadr for our 2nd session. She will be discussing "Optimizing Health through Anti-Inflammatory Eating and Kidney-Friendly Nutrition". ![]() Our 2nd Lupus Health Conference is on July 27th and will be the 2024 Medical Review led by 2 Pharmacists, Dr. Benjamin Hinton II and Dr. “Osa” Edogun. This will be an informative session where they will discuss up to date information on lupus medications and what is in the pipeline. This will be followed by a Q & A session Both events are Free to lupus patients, caregivers, family members and the professional community! FUNDRAISING EVENTS ![]() Drive Out Lupus @ Topgolf This summer we have something for everyone! Do you like to golf?! Do you like to eat brunch and enjoy a Mimosa or Bloody Mary!? Well, you can do both when you join us at Topgolf on Sunday, August 25 from 9am-12pm for 3 hours of golf, eating and mingling! Tickets are on sale now- so grab some friends and buy your tickets before they sell out! Go to www.lfnc.org/topgolf ![]() Outrun Lupus 5K Don’t miss our 30th Annual Outrun Lupus 5K on Sept. 21st at Campbell Park! This is fun for the whole family, including your 4-legged friends! You can run, walk or skip on this beautiful trail and meet lupus patients and other lupus supporters. This is not only our 2nd largest fundraiser of the year but is also a great way to raise lupus awareness. We are excited to have Damian Trujillo from NBC Bay Area/Telemundo as this year's Grand Marshal! 30 Years of Raising Lupus Awareness and Outrunning Lupus is a BIG DEAL especially for a small non-profit and we have some special ways to make it even more exciting! Can you show your lupus spirit and wear bright colors or even dress up like a butterfly? FINISH STRONG WITH A MARIACHI WELCOME!! We will have Mariachi OroAzul de SJSU at the Finish Line to encourage everyone to finish strong!! They are a student-driven music ensemble at San José State University to preserve the tradition of Mariachi music in Mexican culture and community. LIVE BUTTERFLY RELEASE We also will be having a special ceremony at the end of the event to honor lupus patients by releasing live Painted Lady Butterflies. Butterflies are available for purchase as an add-on for $10 when you register. ![]() Meet our 2024 Outrun Lupus Honoree! We are happy to announce our 2024 Outrun Lupus Honoree is Giuliana Mendez. Giuliana was diagnosed with lupus when she was 16 and is an amazing lupus warrior, one of 3 in her family! You can read all of Guiana's story at www.lfnc.org/meet-our-honoree Lastly- we have some great incentive prizes for our fundraisers, including a crossbody bag and a LFNC hoodie! So sign up today @www.outrunlupus.org and even better, grab some friends, family members or even co-workers and start a Team! We can’t wait to see everyone in September!!! ![]() PROGRAM SURVEY- CLOSES JUNE 25th!!! The Lupus Foundation of Northern California is currently reviewing the programs and services that are offered to the patients and their loved ones whom we serve. These programs and services are valuable, but are they enough is the fundamental question we ask ourselves. While we feel connected to and understanding of the patients, we want more. We are seeking your input as to what programs and services we can add or perhaps retire, so that we may better serve the lupus community of Northern California. With your input, we will produce a roadmap of the programs and services that we all agree need to be added, ended or changed so that this process will be transparent, with accountability. At the end of the survey we ask for your name and email. This is not required, but would be helpful in case we want to get more insight into your answer. The survey will only be open until Tuesday, June 25th - can you spare a minute and take the survey now?! You can find it at www.lfnc.org/2024_ps-survey ![]() Stars and Stripes 5K-10K Walk/Run- June 29th! Come and visit the Lupus Foundation of Northern California at our partner run Stars and Strides 5k-10k Walk-Run on June 29th at Discovery Meadow in Downtown San Jose! This flat, fast, and accessible course is perfect for anyone of all ages and athletic abilities. Come for the run, stay for the fun at the Independence Day themed festival featuring:
Register today at StarsandStides.com and use promo code LFNC for 25% off registration! Prices increase on 6/24 so register today! THANK YOU FOR YOUR CONTINUED SUPPORT! We hope you have enjoyed reading this quarters Newsletter. If you are unable to attend our events this summer we hope you will consider making a donation, perhaps even becoming a recurring donor. No matter the size, donations help us continue to offer our free Patient Programs and Services. Thank you! In The News!Exciting News for lupus patients! The Lupus Foundation of Northern California is committed to helping lupus patients and to that end we are excited to share some exciting news about a breakthrough treatment to help manage lupus with AMPEL Biosolutions! We will be scheduling a future patient zoom meeting to hear more about this from AMPEL and give lupus patients a chance to ask questions directly. The Breakthrough Discovery: AMPEL BioSolutions announces a breakthrough in personalized precision medicine that will revolutionize the way doctors manage the autoimmune disease Lupus. Revealed in the peer-reviewed journal Genome Medicine and being made available to patients through a US follow-on study, the LuGENE® blood test forecasts patient flares and drug targets from gene expression utilizing predictive explainable AI. Why it Matters: Physicians rely on a “trial-an-error” approach for Lupus disease management with more than 95% of patients experiencing organ-damaging and often life-threatening flares every year. Currently, there is no way to predict flares or determine which treatment is most appropriate for each patient, and in many instances it can take many years for some patients to find the most effective one to manage their disease. Read all about it here! PATIENT SUPPORT PROGRAMSUpcoming Lupus Health Conferences We have 2 Lupus Health Conferences scheduled for Spring!
As always these conferences are free to lupus patients and those who love them! Sign up today! 9th Annual Purple Ribbon Awards ![]() Thank you to everyone who attended our 9th Annual Purple Ribbon Awards! We had an amazing turnout and such wonderful support from everyone! This year was our largest event in YEARS and it showed in the amount we raised! We blew away our STRETCH GOAL and raised over $100,000, and more is still coming in!!! We returned to work eager to begin planning our Support Group Leader Training and sending a lupus patient to the National Lupus Advocacy Summit in Washington D.C in May! We are also excited to start looking into some new programs to offer lupus patients. Speaking of lupus patients! We truly appreciate all of the lupus patients who joined us as Honoree’s, Guest Speakers, and as guests! We are also incredibly thankful for our Sponsors, our Title Sponsor, Kyverna and our Purple Ribbon Sponsors, Amgen and Aurinia. Between them we were able to invite 24 lupus patients, at no cost to them!! Thank you to all of our sponsors who are listed on the sign in the photo If you wanted to donate but you forgot, don’t worry, you can still donate! Just click HERE. You can also check out the photographs from the evening on our website. LUPUS PATIENT SURVEY As a small non-profit we receive funding in many different ways, including direct donations, grants and sponsorships. Most of our sponsors and the grants we complete want detailed information on the numbers of patients we help each year as well as other information. In order to give the most accurate information we have posted a lupus survey on our website. This survey is anonymous. Not only will it help us as we complete grants and sponsorship requests, it will also help us to plan and design new programs to support lupus patients and their family members in the future. Please take a few minutes to take the survey and feel free to forward it to the other lupus patients you may know! THANK YOU!
We have a few other exciting things in the works so be sure to follow our social media at:
https://www.facebook.com/LupusOnline/ https://www.instagram.com/ https://twitter.com/LFNC Now that the holiday season is in full swing, filled with joyous celebrations and festive gatherings, as someone living with lupus, you may find yourself facing unique challenges. The combination of a more hectic schedule, colder weather, and potential stressors can impact both your physical and mental well-being. As a health and wellness coach specializing in lupus care, and as a lupus patient myself, I know how crucial proactive self-care is during this season. Let's explore some valuable tips to help you not only navigate but truly thrive during the holidays. TIP 1: Prioritize Your Rest and SleepThe hustle and bustle of the holiday season can be demanding, but it's crucial for individuals with lupus to prioritize rest and ensure they get enough sleep sleep. Fatigue is one of our most troubling symptoms of lupus, and lack of sleep can make this much worse. You can be proactive by creating a sleep-friendly environment. This means maintaining a consistent sleep schedule (sleeping and waking up at the same time everyday, even weekends), dimming the lights in your house 2-3 hours before bedtime, and limiting screen time at least one hour before bed to promote better sleep quality. TIP 2: Make Mindful Nutrition ChoicesThe holiday season often brings a plethora of delicious but potentially inflammatory foods. For those managing lupus, it's essential to be mindful of dietary choices to support our health. Opt for an anti-inflammatory diet rich in fruits, vegetables, lean proteins, and whole grains. This is not to say that you should not indulge at all during the holidays and my advice is to try to follow the anti-inflammatory way of eating at least 80% of the time during the holiday season. This leaves space for the indulgences you really love and look forward to like your aunts pumpkin pie or favorite treats in your stocking. TIP 3: Stay Active in a Gentle WayEngage in low-impact activities such as walking, or gentle yoga to promote mobility, improve circulation, boost mood and improve joint pain. I get my family together each year to bundle up and take a walk after Christmas dinner. This has become one of our family traditions and something we all look forward to after a large meal. Of course, if you have been sedentary for a while, listen to your body and consult with your healthcare team before starting anything new. TIP 4:Manage Stress with MindfulnessThe holiday season can be emotionally charged, and as we know too well-- stress can exacerbate lupus symptoms. Incorporate mindfulness practices into your daily routine, such as meditation, deep breathing exercises, or guided imagery. These techniques can help you manage stress, promote mental well-being, and contribute to a sense of calm and balance. TIP 5: Set Realistic Expectations for Yourself and OthersIt's easy to get caught up in the excitement of the holidays and say yes to more invitations than you should. Setting realistic expectations is crucial and that starts with not only recognizing your limitations but getting clear on which activities bring you joy and which activities drain you. I wait 2-3 days before accepting any invitations around this time of year so I can make more thoughtful decisions about where I spend my time and valuable energy. It is helpful to communicate your needs to friends and family and ask for support when necessary. TIP 6: Stay Warm and Dress AppropriatelyCold weather can be challenging for lupus warriors, and can exacerbate symptoms like joint pain, stiffness, and Reynaud’s. Set yourself up for success when venturing outdoors by dressing warmly in layers, wear gloves and a hat, and consider investing in heated accessories to stay comfortable outdoors. Keep your home at a comfortable temperature, and use blankets to stay cozy. TIP 7: Connect with Your Support SystemThe holiday season is a time for connection, and building a strong support system is especially important for individuals with lupus. Surround yourself with understanding friends and family members who are aware of your condition and can offer support when needed. Call on the support group members at LFNC to exchange ideas on how they are making the best of the holiday season. And of course, don't hesitate to seek professional help if you find yourself struggling emotionally. As a health and wellness coach, my goal is to empower individuals with lupus to thrive, not just survive, during the holiday season. By prioritizing rest, making mindful nutrition choices, staying active in a gentle way, managing stress, setting realistic expectations, staying warm, and connecting with a support system, you can navigate the holidays with grace and take care of both your physical and mental health. Remember, self-care is not a luxury but a necessity, and by investing in your well-being, you can make the most of the festive season while managing lupus effectively. Setareh Banisadr, Health and Wellness Coach, Setareh Health The Lupus Foundation is so honored to have lupus patients, like Setareh, who share their time and expertise! As Setareh mentioned the LFNC has many different ways of helping you through this holiday season, you can sign up for a virtual support group, watch one of Julie's mediation videos or do a gentle workout with Regan Birr! All of these resources are free and can be found on our website. Select what you are interested in below!
Please remember all of our patient programs are funded by generous donations! It is not too late to make your end of year donation!
The Lupus Foundation of Northern California's Staff and Board of Directors wish you and those you love a happy and healthy holiday season! As we move into the middle of Autumn we want to take a moment to reflect on our very busy Summer and also let you know what we have planned for the rest of the year!! IN THE NEWS |
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