To Read Tami's Story from the Beginning

Just CLICK HERE. Her blog begins on March 12, 2009 with a post titled "Tami's Myelodysplasia Diagnosis." Then at the bottom of each post, click on the words "Newer Post" located just below the comments section on each page.


Showing posts with label Groups to Join. Show all posts
Showing posts with label Groups to Join. Show all posts

Sunday, August 9, 2009

Lance Armstrong's LIVESTRONG San Jose Army

Yesterday I stepped out of my ordinary by attending a Lance Armstrong Foundation (LAF) event. It was a LIVESTRONG open house in Cupertino, CA. The event consisted of networking and 3 guest speakers.

Clockwise from top left:
Leigh is an LAF Grass Roots Advocacy Trainer and was our emcee for the afternoon. Richard Tate is from HopeLabs a grantee whose company received funds from the LAF to help fight cancer. Giovanna Baldassarre is one of the local LAF grass roots leaders. And Jere is a 3 time cancer patient who is facing her stage 4 colon cancer with the kind of openness and humor that makes her an excellent educator and public speaker.

Dozens of us turned out interested to learn how we can help to raise public awareness about and/or become involved with the Lance Armstrong Foundation and all of the good work they do within our local communities.

In blue was Ronni Shehorn-Maestas who created the website Stepping Stones at www.IntroToCancer.com. I knew of Ronni through my colleague Mimi who is friends with Ronni's sister. Mimi and Ronni's sister have helped to keep me optimistic during Tami's ordeal with cancer as Ronni also received a marrow transplant at the same hospital Tami is being treated at. I didn't get to say hello in person but am sure that Ronni and I will meet again someday.

These shoes weren't made for walking.... They were made for kicking cancer in the ass!

And those shoes belonged to Jere Carpentier the standout guest speaker yesterday. Not only was she informative and entertaining, Jere is a 3 time cancer patient who has also suffered severe damage to her heart from a cancer treatment. After suffering from and surviving Hodgkins Disease and Lymphoma, Jere is now suffering from her third primary cancer, meaning this is a new cancer not an old one that spread, and has stage 4 colon cancer.

But she's not giving up. She is out there educating the general public and recently was asked to speak in Sacramento to help pass a bill to improve chemotherapy treatment options for patients in need just by sharing her own story. She's one of those truly special people, a doer, who even as she is so sick is accomplishing more then most healthy people on a day to day basis.

Richard Tate, Director of Communications and Marketing at HopeLab also spoke. His company has created a cancer themed video game called "Re-mission" for adolescents and teens suffering from cancer. You're probably wondering how a video game can help fight cancer right?

For most of us missing a pill will never have catastrophic consequences but for a cancer patient missing pill can become a matter of life or death. Giving cancer the tiniest foothold to reestablish it's presence must be avoided at all costs. Well studies have shown that the kids who play Re-mission are more likely to become pro-active patients taking their meds on time to help control their cancer and maintain the upper hand over their disease.

Their website says: Re-Mission is distributed by HopeLab to young people with cancer, their families and caregivers free of charge. As of April 2009, more than 142,000 copies of Re-Mission had been distributed to 81 countries worldwide.

To download or order a copy of Re-Mission™, visit www.re-mission.net.

And I made some great new friends. That's Peter on the left. He and his wife Patt Baenen-Tapscott, a cancer survivor, were kind enough to strike up a conversation with me to find out who I am and why I was there at the open house. Turns out they are very involved with the Lance Armstrong Foundation by running a series of practice time trials for those who compete in bike races or just enjoy hobby bike riding. The registration fee (usually $25) is donated to the Foundation. Their website and the time trials are called Beat the Clock & Help Beat Cancer. There's one more ride scheduled this year for August 29th so check it out if you're a cyclist :)

And thanks to Patt for all of the photos in this blog post. She was snapping away throughout the meeting and generously gave me permission to use her pictures for this post.

Hanging out with the LIVESTRONG team at the end of the meeting to learn more about how I and MarrowDrives.org, the new website I'm creating, can help others.

And on a side note: My new nerd glasses are awesome! The room the open house was held in would have normally triggered a migraine for me because of the glaring window light combined with the fluorescent lights overhead.

The glasses are tinted pink (3X) and have a non-glare coating (front and back) to prevent migraine and light induced headaches. Such a simple fix for a debilitating problem.

I've suffered from headaches and migraines for years and was digging around on Google to better understand how light triggers them when I discovered my condition is called "Photophobia" and this treatment balances out too much blue light by adding pink with glasses or contacts. The thing that bothers me most is that my own doctor never told me about them! I had to find out for myself by researching online. The optometrist I went to said this treatment was discovered about a decade ago. I've had them 4 days now and have not had a single headache. Apparently for most people they can prevent the headaches as well as make them go away instantly if you suffer from Photophobia.

The only downside is that because my vision is 20/20 my insurance wouldn't cover the cost of the glasses because they didn't have a prescription in them and apparently that is the only factor used to determine medical need. Am going to have to start complaining about that as clearly my need was medical! But no matter what they cost they are worth every penny. I didn't realize how often I was feeling bad until I felt better :)

Friday, July 10, 2009

International Donor Organizations

We have recently updated the International Donor page on Tami's website. Getting as many people all over the world to register to be bone marrow and stem cell donors is very important.


Do you know anyone who lives in:

Argentina
Armenia
Australia
Austria
Belgium
Brazil
Bulgaria
Canada
China
Croatia
Cyrprus
Czech Republic
Denmark
England
Finland
France
Germany
Greece
Hong Kong
Hungary
India
Ireland
Isreal
Italy
Japan
Korea
Lithuania
Mexico
Netherlands
New Zeland
Norway
Poland
Portugal
Russia
San Marino
Slovakia
Slovania
Singapore
South Africa
Spain
Sweden
Switzerland
Taiwan
Thailand
Turkey
United Arab Emirates
United Kingdom
Uruguay

Why am I asking? Because they all have marrow donor programs. If you, your friends, colleagues and family members tell people they know who live in these countries about their donor programs and ask them to get registered and join, they may very well help to save someone in another part of the world.

The Be The Match Foundation for the National Marrow Donor Program states that 51% of marrow matches now take place internationally where the donor and patient live in different countries. So we can all help to save someone in our own backyard or on the other side of the planet.


There are so many people that do not live in the country they were born in or the country of their ethnicity. And, there are so many people of mixed ethnicities. The best chance to find every single person who needs a transplant a match is to get as many people as we can from all over the world to join their national registries. Please send this link by email or call every person you know telling them about this page on Tami's website and urge them to locate and contact their local donor program to get registered.

Thanks! We really appreciate all the help we can get to spread the word.

Thursday, April 9, 2009

Facebook Group!!

Yay!!!  Our group on Facebook has officially reached 200 members.  If you are a member of Facebook please feel free to join the Helping Tami group and also invite all your friends to join. It's an awesome and free way to get the word out about Tami's condition!!

Wednesday, April 8, 2009

I'm not 18 years old, so how can I help?

Ok, you're reading this and you want to help Tami, or other cancer patients, or do something to get involved but you are not 18 years old yet so you can't become a member of the national registry. How can you help? I know one great way to help is to become a member of Relay for Life through the American Cancer Society.

The Relay for Life Website describes the event as:
Teams of people camp out at a local high school, park or fairground and take turns walking or running around a track or path. Each team is asked to have a representative on the track at all times during the event. Relays are an overnight event, up to 24 hours in length. There is not a required amount of money to raise in order to participate in Relay For Life. The only requirement to participate in Relay For Life is the $10 registration/commitment fee (per person) that is due upon registration.
You can sign up for an event by calling 1.800.ACS.2345 or visiting http://www.cancer.org.

I have a 16 year old daughter, Marina. Marina is a sophomore in high school this year. Her school participates in Relay for Life each year and hosts the event on their track. Marina's team last year raised over $2,000. The kids were so excited that they were able to help and they also had a great time at the event. Their goal for this year is to raise over $5,000. Since the event takes place overnight the track is lit with luminaries that are purchased by parents and students alike. The students really enjoy helping to raise money for cancer research and treatment.

To get an idea of how a Relay for Life team works you can visit Marina's page.


Tuesday, March 24, 2009

HelpingTami.org on Facebook

To join CLICK HERE

Thanks to Jennifer for suggesting we start a Facebook Group for Helping Tami. I just set it up this morning and will post updates and answer questions there. If you're on Facebook please join and help me spread the word :)