2025 IS ALMOST HERE!

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 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 start up 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 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 things I ask is if they have support; and not just family or Partner support (which is also a blessing), support of those who fully understand the scope if 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 hear the stories of how each of us benefit from this group. Seeing everyone together, laughing, relating, lifting each other up supporting each other, letting each other cry; it’s all part of the support and as hard as things can get with life with Scleroderma, 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, but 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 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. There she learned so much 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. 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. 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. 

and I have scleroderma. I am humbled by the opportunity to share my journey with you. 

I was diagnosed in 2014 and told I had a rare disease called Scleroderma and that there was no cure for it. 

It took me about 2 weeks to come to terms with what I needed to do to give myself a fighting chance to live as much of a normal life as I could. 

I did some research and found Dr Clements at UCLA. It took me 6 months to get an appointment with him, but it was well worth it to me. 

At the end of my first appointment, he introduced me to Tina Burger, she is one of the hardest working compassionate advocates for her Scleroderma Warriors I have ever met. I am blessed and privileged to have her in my life. 

It was at that point my education on Scleroderma began. She told me about this amazing organization called the Scleroderma foundation. Where I could attend support group meetings with Warriors like yourselves.

My fellow warriors, I see you. I understand your fear, your loneliness and your pain. As I stand before you, I feel blessed to walk this journey with 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 it or not, if you are a caregiver, a family member, a doctor or a board member, you are all to be commended for your time, effort and the compassion you have to help those of us who do have scleroderma. 

Hello my name is Daisy and I was diagnosed with scleroderma 8 years ago at the age of 17, in my junior year of high school. I remember that my first symptom was that my hands would turn purple when they were exposed to cold weather. But when I started noticing some odd patches on my right leg that were almost black, and a white patch on my nose, I finally went to the doctor.

The doctor right away told me that I needed to get some lab work done and three days later my mom received a call that I had to go see a rheumatologist in Santa Barbara, and a week later the rheumatologist told me without a doubt “You Have Scleroderma”.

I didn’t really think much about it at first, and I was overwhelmed with all the information about my insurance, the disease, my treatment plan and all of the medication I would be taking moving forward and once we got home it hit me, and I knew that my life would never be the same. I cried and my mom started crying with me and we were both so worried of what my future would look like.

To my surprise, the rest of my Junior year I was doing pretty good and not really struggling like I had been told I would, but senior year was a totally different story. It was one of the toughest years for me, struggling to get to class, having a hard time standing up from my desk, so I would use my elbows as support to lift myself up which would cause me to get ulcers on both of my elbows. I was not able to keep up with my friends and started missing out on all my senior activities, because I was just too tired and had no energy.

My closest friends knew that I was sick but really didn’t know how serious it was or how to handle it! I tried to continue to live my life, but it was so challenging at times and in my fourth month as a senior I felt like I was losing the strength and feeling in my legs and fell and punctured my nose in front of my classmates and I was so embarrassed.

My skin was starting to harden, almost as if I was turning to stone, I was so weak and was losing my ability to be independent, needing a lot of help. I tried so hard to stay in school, but in the end, I had to stop as my disease progressed. I even ended up in the hospital to get a pacemaker and then my mom stopped working to help me, because I literally couldn’t do anything for myself, and she had to help me with everything, and I mean EVERYTHING!! I felt like a big baby and was so frustrated that I needed help with the simplest things that I was able to do before, like taking a shower, changing my clothes, wiping myself, and even standing up from a chair or a bed!

I went into a deep depression and I was really struggling with my physical and mental health and stayed isolated in my room and just shut down from everyone and everything.

That’s when my doctor asked me if I was willing to talk to Tina from the scleroderma foundation of California and I gave her permission to share my phone number with her. When Tina called me and we were talking, I was feeling really nervous because I hadn't been social in a while, but our talk really comforted me and gave me hope! From that day forward, my life started to change, for the better, while I was receiving support through my journey with scleroderma. I was invited to my first ever support group meeting in Los Angeles and I was so excited and so were my parents because I was going to meet other people living with scleroderma that I can identify with and didn’t feel so alone. It was worth the 3 hour drive because the meeting was great and I was able to meet so many people just like me and got to meet Tina in person after talking to her on the phone for a few months. 

The Foundation even organized a local support group for the Central Coast which was so much closer for me and I was able to meet one of the support group leaders, Jennifer who I instantly bonded with and became my friend along with other local members! When we were faced with Covid and the Pandemic, Tina started a virtual scleroderma youth group and I was super excited to meet people around my age and was so happy for this group to be a part of my life because I met my other youths living with scleroderma that are now some of my closest friends that has literally changed my life! Hearing their stories really inspired me to push forward and continue on living!

My life has changed so much, with purpose and perseverance living with a chronic illness and the Scleroderma Foundation of California helped me learn how to not let my disease define me but empower me to be the best version of me and help others just like I was once helped.

I keep busy in the scleroderma world since it helps me keep a positive mind set. I’ve participated in an interview for the Foundations local newsletter, went through 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 to understand our roles and opportunities participating in Clinical Research sharing my own experience in a clinical trial. This past January I was invited to share my story the Beta Sigma Phi's General Meeting for the Pacific California Council in Santa Maria, that

will mark the first time talking in front of an audience to share a bit of my story.