Support Scleroderma Foundation of California's Mission

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BOARD MEMBER VICE-PRESIDENT Hello! I have been associated with the Scleroderma Foundation of California since 2016. My good friend, Sharon Friedman, introduced me to the group when I shared with her that a dear and close family member had passed away from this disease. She then introduced me to Helen Greenburg, and what can I say? I was “hooked” of course! I have been a Co-Chair of the Annual Gala since 2017, which helps raise funds for charity events, and I joined the board in 2018. I was born and raised in California, attending school and college in Southern California. My husband, Howard, and I live in West Los Angeles (in the same house for 50 years). We have two amazing sons, one incredible daughter, a beloved daughter-in-law and son-in-law, and 7 extraordinary grandsons. We are very lucky indeed! The majority of my professional life has been as a fundraiser and special events producer in the nonprofit sector of Los Angeles, primarily for social service and health care organizations. Upon retirement from full-time employment, I have spent years as a consultant, particularly to small and startup nonprofits, focusing on leadership coaching, fundraising, and strategic planning. Along with Peggy Hickman and others, I participated in the nearly year-long negotiations to evaluate our chapter’s position with national leadership. Choosing to separate and proceed on our own was not an easy decision. Being involved in the nonprofit world, I knew the challenges that independent and small organizations can face in this ever-changing environment. In the end, I saw the incredible dedication and devotion of the board and our professional staff to our mission and patient-centric services, including scleroderma education and support, and to “making this work.” The decision was then an easy one! That said: we have our work cut out for us. In order to succeed and be competitive, we must actively work to grow and expand our board; increase our revenue streams; strengthen our professional infrastructure and strategically plan to expand our services. This will take the determination and efforts of everyone. With the valuable leadership of Dan Furst as our President, Andrew Emmett as our Executive Director, and Tina Berger as our Patient Services Director, I have gained much insight into the operations of the Foundation. I am optimistic we can and will be successful and that as a group, we will meet our mission to empower the scleroderma community to live better lives through programs dedicated to support, education, and research.

SUPPORT GROUP LEADER My name is Brittany, I am 32 years old, and I am a co-leader of the Young Adults Support Group. Being given this opportunity was truly a blessing, and I am so honored to have been chosen. When I was diagnosed 11.5 years ago, I needed the support that we have created in this space, with people our own age going through similar life events as us. Whenever I meet new patients, with any disease, but especially Scleroderma, the first thing I ask is if they have support—not just family or partner support (which is also a blessing), but the vital support of those who fully understand the scope of what we’re going through. SUPPORT GROUPS ARE SO NEEDED. It is so comforting for me that I can say the most off-the-wall symptom and others will look at me crazy, but my group will fully understand. What I enjoy most about being a leader is seeing everyone come together and hearing the stories of how each of us benefits from this group. We also share information on charity events and scleroderma education, which helps us all grow. Seeing everyone together, laughing, relating, lifting each other up, supporting each other, and letting each other cry; it’s all part of the support. As hard as life with Scleroderma can get, I love watching everyone together. I love seeing the friendships that branch off and the connections made. Everyone needs support, but support with a rare disease can be hard to find. Fortunately, we have it here, and I will continue to spread the word and thank the foundation for these opportunities!

SUPPORT GROUP CO-LEADER Marissa was diagnosed with scleroderma during the pandemic but believes she had it a couple of years prior to receiving her diagnosis. She attended her first scleroderma support group meeting with her daughter and one of her sisters. There she met Kelly Ryan. After talking for a couple of hours, she was immediately in awe of Kelly’s optimistic attitude and her drive to live her best self with scleroderma, and she adds above all, “I really enjoyed her humor... She's really funny!” What didn’t she expect to do at the meeting? Raise her hand at the opportunity to become a co-leader. Marissa says, "I have a lot of support from my family and my close friends, but I felt I needed support from people that understood what I was going through. At my first meeting, I was eager to know and learn from others who were further along in their journey.” Marissa left feeling excited but also nervous, wondering how she could be a leader being so new in her condition. Then, she was encouraged to attend our Patient Education Day in Northern California, where she learned so much about scleroderma education and was so glad she went. It made her feel surer of herself, and she was now looking forward to learning more from co-leader Kelly. Marissa hopes to learn a lot and be helpful to others. “Being new in a support group with others further along can be overwhelming, but that’s also the great part because we can all learn from each other. I’m grateful to be part of this support group, and being a co-leader has given me a purpose in this life that's been chosen for me. What advice does she have for people with scleroderma or other chronic illnesses? "Try to do your part; don’t just depend on the medications to make you feel okay. You must do your part in trying to get better. And in those moments when you feel like you can’t go on anymore, list all the things that matter to you and that you’re grateful for, because those are the two things that have helped me. I’m also grateful to be able to share my story in the hopes that it helps or inspires somebody. Additionally, if you don’t have a pet, get one; they give unconditional love. Participating in charity events can also uplift your spirits, and I’m grateful to be able to share my story in the hopes that it helps somebody or inspires somebody. Also, if you don’t have a pet, get one; they give unconditional love.

I was diagnosed in 2014 with a rare disease called scleroderma, and I feel humbled by the opportunity to share my journey with you. After learning that there was no cure for scleroderma, it took me about two weeks to come to terms with my situation and figure out how to give myself a fighting chance to live as normal a life as possible. I conducted some research and discovered Dr. Clements at UCLA. Although it took me six months to secure an appointment with him, it was well worth the wait. At the end of my first visit, he introduced me to Tina Burger, one of the hardest-working and most compassionate advocates for scleroderma warriors I have ever met. I am truly blessed to have her in my life. This was the beginning of my scleroderma education. She informed me about an amazing organization called the Scleroderma Foundation, where I could participate in support group meetings with fellow warriors like yourselves. My fellow warriors, I see you. I understand your fear, loneliness, and pain. As I stand before you, I feel fortunate to walk this journey alongside you. Together, we will become stronger, more knowledgeable, and fearless. Last week, I celebrated my one-year anniversary of having a double lung transplant. I believe that everyone in this room is a scleroderma warrior, whether you have this condition or not. If you are a caregiver, a family member, a doctor, or a board member, you all deserve commendation for your time, effort, and compassion in helping those of us living with scleroderma. Additionally, participating in charity events can further support scleroderma education and the community. Thank you for your commitment.

Hello, my name is Daisy, and I was diagnosed with scleroderma 8 years ago at the age of 17, during my junior year of high school. I remember my first symptom was that my hands would turn purple when exposed to cold weather. However, when I noticed odd patches on my right leg that were almost black and a white patch on my nose, I decided it was time to see a doctor. The doctor immediately suggested lab work, and three days later, my mom received a call that I needed to see a rheumatologist in Santa Barbara. A week later, the rheumatologist confirmed, without a doubt, “You have scleroderma.” At first, I didn’t think much of it and felt overwhelmed by all the information regarding my insurance, the disease, my treatment plan, and the medication I would need moving forward. Once we got home, it hit me that my life would never be the same. I cried, and my mom joined me, both of us worried about what my future would look like. Surprisingly, during the rest of my junior year, I was doing reasonably well and didn’t struggle as much as I had been warned I would. However, senior year was a different story. It became one of the toughest years for me as I struggled to get to class, had difficulty standing up from my desk, which led to ulcers on my elbows from using them for support. I couldn’t keep up with my friends and missed out on senior activities because I was just too tired and lacked energy. My closest friends knew I was sick but didn’t fully understand how serious it was or how to handle it. I tried to live my life, but it was challenging. In my fourth month as a senior, I felt like I was losing strength and feeling in my legs and fell, puncturing my nose in front of my classmates, which was incredibly embarrassing. My skin began to harden, as if I were turning to stone, and I was losing my independence, needing significant help. I fought to stay in school, but ultimately, I had to stop as my disease progressed. I even ended up in the hospital to get a pacemaker, and my mom had to stop working to help me because I literally couldn’t do anything for myself. She had to assist me with everything, from taking a shower to just standing up from a chair! I fell into a deep depression, struggling with my physical and mental health, isolating myself from everyone. That’s when my doctor asked if I was willing to talk to Tina from the Scleroderma Foundation of California, and I agreed to share my phone number. When Tina called, I was nervous because I hadn’t been social in a while, but our conversation comforted me and gave me hope! From that day forward, my life began to change for the better as I received support through my journey with scleroderma. I was invited to my first support group meeting in Los Angeles, which thrilled both me and my parents, as I would meet others living with scleroderma who understood my experience. The three-hour drive was worth it because the meeting was fantastic, and I met many people like me, including Tina, whom I had spoken with on the phone for months. The Foundation even organized a local support group for the Central Coast, making it easier for me to connect with others. I bonded with one of the support group leaders, Jennifer, who became a friend, along with other local members. When Covid hit, Tina started a virtual scleroderma youth group, and I was excited to meet peers my age. This group became a vital part of my life, introducing me to other youths living with scleroderma, some of whom are now my closest friends. Their stories inspired me to keep pushing forward. My life has changed significantly, filled with purpose and perseverance while living with a chronic illness. The Scleroderma Foundation of California has empowered me to not let my disease define me but to become the best version of myself and help others as I was once helped. I stay active in the scleroderma community to maintain a positive mindset. I participated in interviews for the Foundation’s local newsletter, underwent training to become a co-leader for the Central Coast scleroderma support group, and was invited to sit on a panel by the Center for Information & Study on Clinical Research Participation to educate and empower patients and the public about our roles in clinical research, sharing my experience in a clinical trial. This past January, I was invited to share my story at Beta Sigma Phi's General Meeting for the Pacific California Council in Santa Maria, marking my first time speaking in front of an audience to share my journey.