Was established in 2021 to honor the memory of our beloved friend, Helen Greenburg.
All gifts will support our patient services programs to further her commitment and devotion to supporting the Foundation and making a difference in the lives of those affected by scleroderma.
We hope you will consider a gift in her memory.
COMMITTED TO MAKING A DIFFERENCE
Helen’s character and personality will forever be present for all those who knew her.
Helen was always thankful to the Foundation for assisting her to navigate the medical system and providing her with the opportunity to meet other patients.
She knew that not every scleroderma patient or their families were as fortunate as her. So, when asked to help support and grow the Scleroderma Foundation of California, she agreed to help.
And did she ever.
With her extraordinary family and group of friends always by her side, Helen committed herself to raising funds for the Foundation, to support our patients, their families, and all our scleroderma communities.
As our Key to a Cure Gala Co-Chair since its beginning, she grew a small social gathering of friends and family into our largest fundraiser of the year. And, each year "TEAM HELEN" was always one of the top fundraising teams at or community walk events.
As a member of the Southern California Chapter Board of Directors for 13 years, including six years as Vice President, she was always a presence representing the Foundation at Education Days, Support Group Meetings and the National Conference Leadership Days.
She accomplished so much to help improve the lives of all those we serve, and we hope you will consider making a gift in her memory and help carry her legacy forward.
MY BOARD MEMBER STORY - BY HELEN GREENBURG
Written by Helen in 2017
I was diagnosed in 2000 - 17 years ago, I had to travel out of State to get diagnosed. I was in complete shock. I was connected to UCLA to Pulmonary Specialist through the out of state doc, who put together a team of doctors at UCLA for me, and have also been diagnosed 10 years later, with Pulmonary Hypertension.
A bit of history - I attended my first support group meeting at Kaiser Permanente in West L.A. with my husband about 16-17 years ago and met Josephine Battyany who remembered us and mentioned us to Brian Adams when he became the Executive Director for the Foundation.
We then got a call from the Foundation’s Executive Director, Brian Adams, who asked to meet with both my husband and I for coffee, at Starbucks It was at Josephine's suggestion that Brian reach out to us to get involved with the Foundation. Don't know how Josephine figured that out, but ever since then the Foundation became very much part of our lives. When Brian asked, you couldn't say "no" to Brian. Brian and Josephine met with me again and asked if I would serve on the Gala Committee, and who could say "no" to both of them ganging up on you. Josephine and Brian together, the duo that you fell in love with immediately.
As time went on, I realized how lucky I was in living a close to normal life, managing my illness with the help of an amazing group of docs with occasional ups and downs and that not everyone in the Scleroderma community was as lucky as I was. I saw first-hand the need, and how much there is, yet to be done. I proceeded to get more and more involved and found myself in the position of Chairing and Co-Chairing the Annual Galas over the years. This most recent Gala in 2017 raised the most amount of money ever and had the most attendance ever.
The Scleroderma Foundation community helped me navigate through the medical system with information and resources that I never would have known about if it wasn't for my involvement. I was meeting other Scleroderma patients who survived some tougher ups and downs than those that I experienced, and they had such a positive attitude that it was catching and gave me the will to not look back, but push ahead, stay positive and look forward.
In 2007 I was asked to be part of the Scleroderma Board of Directors and 6 years later was asked to be on the Executive Committee and became Vice President of the Scleroderma Foundation.
I started getting involved in the Walks when my daughter and family/friends started a Team, we always came in as the #1 Team in fundraising at the LA Mirada Walk and most recently at the San Fernando Valley Walk. I have a very supportive group of family members as well as friends, who stood at my side through this whole experience, and who are supportive with the events that Scleroderma has, which makes me feel and look like a superstar.
I got involved and active in the Foundation because I saw the need. There is so much work to do in all areas whether it's the support groups, Advocacy, patient support, or the education days. The Scleroderma Foundation community became my family. To watch how my fellow board members are so dedicated and work so hard for the cause, is what makes me want to stay connected.
So, as you can see from some of this history, it all goes back to my first support group meeting. This is where it all started. Without you support leaders who give so much of your time, and yourselves, we wouldn't have all these great support groups where patients come, connect with people like themselves, support each other, get information on doctors, new drugs, everything they need to know.
God bless you all and may you keep up the great work you all do. With much respect and appreciation.
