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
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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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