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Beth Steinberg “guest blogging” — My Connection to the Leukemia & Lymphoma Society(LLS)

March 25, 2009 Leave a comment

I am “guest blogging” for Dan to share my connection with LLS and why I was one of the first people to write Dan a check for Man of the Year. My connection with LLS started many years ago.  I was a volunteer in Patient Relations at the Lucile Packard Children’s Hospital at Stanford.  I was on the 2nd floor, then the oncology floor.  My role was to make sure the parents and patients knew the resources that Stanford made available to them.  Sometimes I answered questions about where the washing machines were, and sometimes parents would cry on my shoulder about the pain their child was going through.  It was tough, but I saw much more that made me happy and hopeful.  One of the best parts of my shift was to see a little girl with leukemia, Indigo.  She was 6 and had gone through a very rough time with chemo.  She had a great mother, Roza, who was a single parent to Indigo and her sister Silver.  The courage and grace I saw from Roza is something I may never see again in my life.  She amazed me with her strength during such a tough time.

Time passed and Indigo was released from the hospital.  I missed seeing her at the hospital, but was so grateful she was well enough to be home.  When I received a phone call from Stanford, telling me Roza and Indigo had called repeatedly to try to get my contact info, I was so happy.  We were able to connect thanks to Stanford knowing when to bend the rules and allowing us to exchange contact information.

I decided I wanted to do more, and heard about LLS’s Team in Training program.  I was a casual runner, but never came close to running a marathon before.  I signed up, and Indigo became an “honored patient”.  The program was great and Indigo and her family came to the runs to support the team.  You knew the pain you were going through during the run, could not compare to what Indigo and her family were going through.  It made you determined to finished.  I did finish my first marathon, and 7 more marathons with TNT.  I have been so lucky to have so many people support me and keep writing me checks year after to year.

Indigo is now 16 and doing great.  She is strong, happy and healthy.  Indigo thrived with the support of the Leukemia & Lymphoma Society.  Huge strides have been made in treatment and patients have a place to go where they know they can get support to help them navigate through the disease.

So, I am urging you to support Dan in his quest to raise money for LLS. I have seen first hand the impact of Leukemia & Lymphoma Society and know they make an amazing difference.   I guarantee you the money will make a huge impact.

-Beth

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Patient Services at LLS

March 23, 2009 Leave a comment

Pat Kramer, Manager of Community Outreach in Patient Services for LLS, was gracious enough to spend her morning talking to me about all the services LLS offers to individuals and families suffering from blood cancers.  Before joining LLS, Pat was an Oncology Nurse Educator and Consultant focusing on cancer related anemia and fatigue.  I have a number of friends who raise money for the Leukemia & Lymphoma through Team in Training, but I didn’t really know where that money went.  Here is a very brief synopsis of the services they offer:

Financial: They allocate $500 per year for transportation expenses to all blood cancer patients.  That might not seem significant, but some patients travel long distances to see specialists and the costs can be extensive.  Depending on the diagnosis, LLS may also provide up to $5000 per year to help with co-pays that insurance companies won’t cover.

Emotional Support:  LLS has a variety of support groups for cancer patients and their families to help cope with the emotional distress caused by radiation treatment as well as the stigma associated with having a life threatening disease.  Pat told me about a group of high school students that created materials to share with school mates about how to interact with other students going through chemotherapy. Additionally, LLS connects volunteer survivors with newly diagnosed patients to help them learn coping skills and share their experiences.  To be diagnosed with a disease and then to actually speak with someone who has beat it gives the patient hope and an understanding of what to expect. Along those lines, LLS provides young patients with interactive and educational materials like “The Stem Cell Transplant Coloring Book” giving young people a positive and creative way to understand their treatments and the purpose for them.

Education:  LLS is the single biggest resource for education about blood related cancers.  The IRC (Information Resource Center) helps provide accurate and current information on blood cancers through their website and 1-800 line.  They interface with doctors to make sure patients are informed regarding the latest research and hold seminars to educate individuals about clinical trials.  LLS also creates educational materials and programs to help clarify treatment options and provide information to patients and families in several different languages.  All free of charge.

75% of the money raised goes directly to funding the mission.  They operate on a very lean budget and rely heavily on volunteers.  LLS is an incredibly well run organization that is able to both give direct support to patients and also be involved at a strategic level through advocacy programs on Capital Hill.  I’m incredibly honored to do my small part to support the Society’s work and am very thankful that Pat took the take time out of her busy schedule to speak with me.

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And Here We Go…

March 23, 2009 Leave a comment

This past Thursday was the official kickoff for the San Francisco Man & Woman of the Year campaign.  There is a pretty impressive list of nominees like Roberta Gonzales from CBS and Dr. Melina Jampolis from CNN and then there’s me.  Caely and the rest of the team at LLS did a fantastic job organizing the event and Adrianna’s speech was incredibly inspiring.  Since Thursday I’ve been thinking about my goals over the next 10 weeks and how much I’d like to try and raise.

Julie, Melissa, Emily, Mark, Will, Karen, Joe and Tim have all been working really hard to make Monte Carlo Night successful and I think the event is going to do extremely well.  We have some pretty amazing auction items and have lined up a number of great sponsors like Clue Chip Tek, Beachstreet Consulting, Mas Sake, the Westin Whistler and a few hotels in France that we’re hoping to announce soon.  I’m reasonably confident that we can raise about $100,000 for LLS with just Monte Carlo Night.  I also have a personal goal of raising $1000 per day over the next 70 days.  Given the state of the economy that might seem a little unrealistic, but I don’t think so.  Beth Steinberg donated our first $1000, one day down, 69 to go!  I have an amazing group of family, friends and colleagues who are rallying to help.  I’m inspired, my friends are inspired and we’re really beginning to gain steam.  It’s going to be a fun 10 weeks!

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The LLS Boy & Girl of the Year

March 3, 2009 1 comment

When Joe Belluomini approached me about being a nominee for the Leukemia & Lymphoma Society’s (LLS) “Man of the Year” I was definitely intrigued, but a little apprehensive.   Lately, I’ve been thinking of ways to broaden my philanthropic work, which has included Big Brothers of America and Hands on Bay Area, so Joe definitely had my attention. Working at Mozilla has also taught me a lot about the difference and scale a group of motivated people can achieve, so the idea of doing something as impactful as “Man of the Year” got me excited.

The apprehension part: the publicity and speaking involved with “Man of the Year.”  I’m ok with attention, but I’m uncomfortable being the center attention, as I’m sure most people are.  But as I’ve gotten more involved with the campaign, that sense of anxiety has dissipated.  The campaign isn’t about me — it’s about raising funds in honor of Calvin Kamson and Adrianna Tucker, the LLS Boy and Girl of the Year.

Let me tell you about them: Adrianna was diagnosed with Acute Myelogenous Leukemia on November 3, 2005 and began treatment the very next day.  Throughout her treatment she remained positive, always helping the medical staff and being involved in her personal treatment plan.  This April marks three years since her last treatment and although she is no longer taking medication, she routinely goes for check-ups every three months.  Today, Adrianna is a happy and energetic 7th-grader with a 4.0 GPA.  She aspires to attend UC Davis and become an oncology veterinarian. Adrianna plays basketball and runs track and cross country for her school.  In June 2007, she earned her black belt in Kajukenbo.

In Fall of 2005 Calvin was diagnosed with Acute Lymphocytic Leukemia (ALL). In December of 2008, Calvin celebrated his 8th birthday and his final treatment for ALL.   His post-treatment regimen includes six months of antibiotics to boost his  immune system, monthly visits to the oncologist and routine blood draws for the next two years.  Calvin is a very happy and bubbly second-grader who enjoys school and loves to learn.  His likes playing video games, watching movies and playing hoops with his brother Tayo.  He is currently enrolled in a drama class and rehearsing for a play production in April.  In his “free time” he plays baseball, basketball and soccer!

The adversity that Adrianna and Calvin have had to face and the bravery with which they faced it has been incredibly inspiring to me.  I am deeply honored to raise money in their name.  The money raised will go to additional blood cancer research, providing critical information and support for patients, caregivers and health care professionals.  Research funded by LLS has led or contributed to such advances as chemotherapy, bone marrow and stem cell transplantation and new, targeted oral therapies such as Gleevec.

In support of the Leukemia & Lymphoma Society I will be organizing several events culminating with the 7th Annual Monte Carlo Night at City Hall. Again, I’m deeply honored and excited about the campaign and even though the economic climate is challenging, I’m confident that people will still see the importance of sparing what they can to help with such a worthy cause and campaign.  While I’m raising funds in the name of Calvin and Adrianna, I’d like to encourage people to share stories and post pictures of how they have been effected by Leukemia, Lymphoma and other blood related cancers.

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