Welcome to Maria Tupala's Member Page
Member Since:  September, 2010
Total Raised:  $3,420.00
Thanks for visiting my Cure Crew page!

I am very familiar with scleroderma and the work accomplished by the Scleroderma Research Foundation because I have been a staff member for over 8 years. I started off as a admin answering the phones and processing the backlog of donations that resulted from the office's recent move up to San Francisco from Santa Barbara. Because we have always been a small operation, I have worn a wide range of functional hats for the SRF; admin, donor relations, donations handler, marketing, volunteer manager, event planner, Cool Comedy - Hot Cuisine seating tsarina, resident database expert and policy and procedures wonk.

And now, I can add bona fide Cure Crew member to that list! You can track my progress, training and randon musings on my blog here: http://sclerodermafundrun.blogspot.com/

my events

  • Fundraising Goal:

    Donations Raised:

    Race Against PH
    Date/Time:  Sunday, November 06, 2011 at 08:00AM
    Street Address:   Stanford Campus
    City/State:   Palo Alto, CA
    I'm running again! Since I fell short of my fundraising goal for the Rock N Roll Half in San Jose, I thought I'd try to keep the ball rolling with the 5k in November.
  • Fundraising Goal:

    Donations Raised:

    My Supporters:
    Maria Tupala $35.00
    Amy K Hewitt $100.00
    Steven Brooks $500.00
    Ilana Schreibstein Anonymous
    Marianne Edgeworth $35.00
    Adobe Systems $500.00
    Carlos Torres $50.00
    Susanne Harris $35.00
    Charles Spaulding $100.00
    Jessica Richard $35.00
    Google, Inc. $250.00
    San Jose Rock N Roll Half Marathon
    Date/Time:  Sunday, October 02, 2011 at 08:00AM
    Street Address:   DOWNTOWN
    City/State:   SAN JOSE, CA
    Phone:   415-834-9444
    I will be running 13.1 miles on Sunday morning, October 2nd, to raise awareness and money for scleroderma research. Having worked at the Scleroderma Research Foundation for more than seven years now, I have heard and am inspired by many of the stories shared by patients of this terrible disease. There are striking consistencies between them; most people had never heard of the disease before they, or someone they knew, was diagnosed. Once they finally learned how to pronounce it correctly, the second challenge of finding appropriate treatments became top priority. Sadly, it can take years to get the right diagnosis because many doctors don't recognize the symptoms or confuse them with other autoimmune disorders. The treatments are not well known and there can be some very serious side-effects. We must pull this disease out from the sidelines and put scleroderma on the map!

    Among the hundreds of stories I have heard while working here, a few stand out in my mind. While I am not afflicted with scleroderma nor is anyone in my immediate circle of friends, it turns out that an immediate family member of two different friends from college suffers from this disease. The mom of one friend has the localized form of the disease while the sister of another friend has systemic scleroderma.

    In my time at the Foundation, I have been fortunate to meet many patients and to be a part of the team responsible for putting together a short video that highlights the devastating effects of scleroderma on people who live with it. You can view it here on this page by clicking on the "Moving Forward" video on the right side of the screen. I cried every single time I saw it. Every. Single. Time. That film really brought it home for me in a way that I hope will also help to educate you and people you know. Please help me to help people living with this disease. More people need to know about it.

    In the past few years, the Foundation asked two younger patients, Jenny Faenza (17) and Marina Duque (13), to be a part of our national Cool Comedy – Hot Cuisine fundraisers in an effort to increase awareness and share their experience. Both of these young women were articulate and engaging. They were both powerfully effective speakers. Sadly, both girls died shortly after their appearances due to complications from scleroderma. They are among the thousands of patients who lose their lives to scleroderma each year. We need to change this.

    I hope you'll donate today to fund vital research that WILL one day save lives. I believe strongly in this vision and know that it can only become a reality if we partner together. I’ll run my butt off in the San Jose Rock n Roll Half Marathon. All you need to do is write a check and mail it in or click right here to donate with a credit card, which inspires me to run even harder. Let’s do this for Jenny, for Marina and for so many others who either fight against this disease or have succumbed to its complications. Thank you so much for reading this and for supporting me as I run to make a difference.
    UPDATE: I ran the race while 12 weeks pregnant in 2:08:47, just 3 seconds off my personal record for a half marathon distance.