Connective Issues - Winter 2020

to participate to the extent possible. In this way, we hope that our more mature colleagues will be replaced as needed by younger and equally expert and committed health professionals upon whom the Foundation and the community can depend. We truly treasure the opportunity to have worked with the Foundation over the decades and trust we have assisted in improving both the life expectancy and the quality of life for everyone with Marfan syndrome and related conditions. Hopefully, the legacy we leave will survive and echo even after our involvement and words are behind us. ENSURING ACCESS TO ANNUAL CONFERENCE As this edition of Connective Issues goes to press, the campaign – which was fueled by an initial leadership gift from Dr. Reed Pyeritz and his wife, Jane Tumpson – surpassed $1 million on December 31, 2019, just 24-months from inception. The Annual Conference has, for over 35 years, been a yearly highlight of The Marfan Foundation and an important touch point for members of our community. The conference is a life-changing experience for individuals and families living with Marfan syndrome and related conditions because they can learn from leading medical experts and connect with others who are on the same medical journey. However, despite their desire to attend Conference, many cannot attend due to the financial hardship of dealing with a genetic condition. In 2018, the Foundation launched the Ensure Access Campaign – with a goal to create scholarships to Ensure Access to conference for years to come. The Foundation is grateful to the Ensure Access Chair, Patricia McCabe, and Co-Chairs, Cory Eaves, Karen Murray, and Dr. Pyeritz for their commitment to this campaign and to the many members of our community who have supported it. If you would like to support this effort, it’s not too late, your gift matters and will have a lasting impact to ensure all who need to attend Conference have the ability to for many years to come. In the next issue of Connective Issues , we will have a complete update on the Ensure Access Campaign and stories of those whose support made its success possible.

A LASTING LEGACY Elisabeth Ann Kane, known as Lisa to her friends, passed away in February, 2019, after a long struggle with Marfan syndrome. She was 64 years old. The lifetime resident of Ohio was not diagnosed with Marfan until she was 31, despite having many of the outward signs of the condition. Lisa received her BA from the College of Wooster in 1977. A gifted artist, she went on to earn her BFA at the prestigious Cleveland Institute of Art in 1984. Lisa was highly intelligent, imaginative, and creative. Despite severe medical issues throughout her life, she was able to maintain a strong strength of character and her sense of humor. An accomplished artist, Lisa found joy through her art. Her friend, Day Logan, said during her eulogy, that Lisa “loved the arts. Not just art painting, but also music, dance, theater, and film. She was an incredibly gifted pianist and would compose her own songs on the piano.” During her life, Lisa never knew anyone else with Marfan, but when she got a computer, she visited Marfan.org and learned about her condition and the work of The Marfan Foundation. Though she watched from afar, she truly valued all the Foundation does for individuals and families living with Marfan and related conditions. In her will, Lisa was generous to her friends. She was also generous to The Marfan Foundation, leaving a bequest worth more than $500,000. Half of this contribution will support the Foundation’s programs. The other half is designated for the Elisabeth Ann Kane Memorial Research Fund to support critical research, including the Aortic Valve-Sparing Operative Outcomes Study, a multi-center, multi-year project that the Foundation supports. The Marfan Foundation is forever grateful to Lisa for her generosity in creating a lasting legacy that will benefit people with Marfan syndrome and related conditions for generations to come. To learn how to leave a legacy gift to the Foundation, please contact Megan Martin, mmartin@marfan.org. All inquiries will be held in confidence.

Find out more about how you can help Ensure Access at Marfan.org/ensureaccess

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Winter 2020