Hope Scarves donates $50,000 to research!

Hope comes in many forms.  At Hope Scarves we share hope as scarves & stories.  Over 3,000 sent around the world… And, now we have expanded to RESEARCH!

566f1fa1a589b49e7f715ac0Thanks to the overwhelming support of donors (like you!) we made our first donation to the University of Louisville Clinical and Translational Science Institute on Tuesday, December 10th.  100% of our gift goes directly to Dr. Yoannis Fernandez-Imbert and the work she is doing to understand the role of glucose metabolism and Metastatic Breast Cancer. She and her team are working to determine the effects of simultaneous suppression of estrogen signaling and a key metabolic enzyme known as PFKFB3 on sugar metabolism, growth and survival of metastatic breast cancer.  This research has real world potential to change patient care in the near future.

I am pationately dedicated to ensuring our donations support tranlational studies that can go from the research bench to bedside, creating better treatment options for people like me living with this disease.  This gift to UofL is just the beginning.  I am working with other organizations who share my vision to increase support for translational metastic breast cancer research and plan to collaboratively make an even bigger impact in the future.  Stay tuned!

A portion of each dollar Hope Scarves raises goes to translational research.  Or, you can give directly to the Metastatic Breast Cancer Research Fund.  (Shameless plug!  No pressure… just sayin…) Thank you to our friends who supported Hope Scarves to make this possible.  We promise to be good stewards of your gifts and look forward to what we can do together in the future.

I wish you and your families a wonderful, hopeful holiday.  It will be for us, that’s for sure.

With hope,

Lara

 

It’s Always Something…

Your holiday safety message–> Use the proper tool for the job.

Last week I attempted to deck the halls by cutting a magnolia with a kitchen knife… and subsequently sliced my thumb.  Through the tendon…  que ER trip, emergency hand surgery and very tight, annoying cast for 3 weeks followed by intense physical therapy…  Yes.  For real!

56683fa2f020655d2980924dAll this lead me to be very frustrated, sad and mad at the world.  You see I have been relaying on the kind help of others for the past two years.  This holiday I was “back!” I was planning parties, decorating, baking.  Coming off a great birthday and so excited for the holidays.  I had gotten to a point in this crazy ride where I was allowing myself to be happy… carefree even,  It felt great!  And then, with a split second and newly sharpened knife… I was broken again.

After tears and being a real B&*ch I am reminding myself… this will heal.  This could happen to anyone… it’s totally life!  Life!!!!  In all it’s frustration, pain, itchy castness. This is what I’m fighting for.  Of course, I’d rather it be joyful and happy.  But even in the frustration and brokeness… I am living.

So, when things don’t go your way.  When you or someone you love slips up.  pause. (allow yourself to scream & cry if you need to) Take a look at the bigger picture and rally for this one, messy, imperfect life.  Hug. laugh… live!

Thumbs up,
Lara

(shortest post ever… because I am typing with one hand…)

Shiny golden moments

This past weekend we all focused on gratitude.   A feeling hard for many facing advanced disease or crippled by fear.  A feeling I searched for in the midst of panic just two years ago.  Now, as I approach the holidays in a healthy, strong body I am overwhelmed with gratitude.   I wouldn’t have dreamed I would have so much time to truly “be me” after my metastatic breast cancer diagnosis.  But, here I am- healthy and living life to the fullest.  It is hard to share this happiness when I know so many with this disease who are not doing well.  I watch family after family crumble as they face a future without a mother, sister or friend.  For a long time I was afraid to celebrate my health for fear of making the fall back into sickness harder.  Holding this joy back in compassionate consideration of friends whose bodies are not healthy and for whom these experiences aren’t possible. You see, I am in a slim percentage of patients with this disease whose body is holding strong against the cancer… for now.

And so, for now, we celebrate and give thanks!  Because I don’t ever want to look back on these healthy times with regret.  I want to live each day in the fullest, most positive, meaningful, biggest way I can.

565da8eba589b4d6569dda57So…this past weekend – in typical Team Mac fashion.  We gave thanks for friendship, family and birthdays!   Starting with a 40th birthday party for a dear friend in Louisville, An exciting day of football on Sat with our Alabama framily (Roll Tide!).  Followed by a surprise trip to New York City, planned entirely by my amazing husband, Jay, to celebrate by 39th birthday!  Team Mac took on the Big Apple – Museum of Modern Art, Nike Town, Times Square, Today Show, Ice skating in Rockefeller Center, Walking the high line, Chelsea Market, 5th Avenue, carriage ride in Central Park, great meals, subway rides, Lion King on Broadway, football in Central Park, Top of Rockefeller Tower and so much more!  Walking hand in hand with each of my boys, sitting on the floor of the MOMA with Bennett on my lap staring at water lillies, watching the sunset behind the skyline as we played football, walking and walking and walking and the boys being so excited.  So many precious shiny golden moments of joy to add to our memories together!

Then, flying to Michigan to spend the Thanksgiving holiday with family at Jay’s parents cabin!  The snow fell as we snuggled together by candlelight telling stories, playing cards and listening to cousin laughter.  Sledding, champagne, hiking, horseback riding, euchre, delicious meals, art projects, saunas, cozy warm mornings sipping tea by the fire and talking.  More shiny gold memories….

I’m glad to say we’ve always lived our life this way – big adventurous fun.  But, now that time is even more precious, we do it even more.  Four states in a week.  I love this happy, healthy time together as a family.  I want it to last forever.   At least I know the shiny golden memories are tucked away in our hearts.  forever.
Don’t wait to make these memories with those you love.  And when you find yourself in the middle of one of those shiny gold moments – pause and give thanks.  Tuck it away and hold it tight in your heart.

These are the moments we live for.
Lara

The deepest, most brilliant pink of all

I love to celebrate.  My friends know that PETscans and champagne go hand and hand. However, I feel the breast cancer movement has become too much of a celebration… to the point that it masks the reality.  The general public thinks breast cancer is something to be celebrated.  That we are winning this “battle.”   We forget people are dying.  111 EVERY Day.  This is not something to celebrate.

When we hyper focus on celebrating survivors and beating cancer we unintentionally alienate those who aren’t “winning.” Infact, the focus on survivorship and beating cancer has become such a prominent symbol for breast cancer that those dying of breast cancer feel alienated and forgotten. They feel so strongly that the breast cancer movement doesn’t represent them that they created their own ribbon.  It is teal and blue with a small bit of pinkin the center.  I find it incredibly disappointing that the people suffering the most, enduring heart wrenching devastation and painful treatments as they face death feel isolated from the very movement that set out to help them. They shouldn’t feel forgotten – they should be at the heart of the movement – represented by the most brilliant, deepest pink of all.

I have avision that in addition to celebrating all the people who beat cancer there will be a colossal shift toIMG_0182-214x300 rallying around those dying.  I liken it to the AIDS movement in the 1980s.   During the early epidemic, 40,000 men were dying every year—people marched, made noise, and got the drugs to keep them alive. The community rallied around the dying demanding more money for research to help them, demanded people see the heart wrenching pain of the disease.  They didn’t just rally around the healthy people and show pictures of smiling people who beat AIDS… they focused on the weakest and the sickest and demanded research to help them.

It is estimated that in the US, only 2-3% of all funding for breast cancer research is dedicated to metastatic breast cancer(1), even though 30% of breast cancer cases become metastatic. This is not enough research aimed at finding new treatments and enhancing quality of life for people like me, living with metastatic breast cancer.  That’s why I helped found an organization called Twisted Pink whose sole purpose is to fund metastatic breast cancer research and why my organization, Hope Scarves, now donates a portion of every dollar we raise to metastatic breast cancer research.  I challenge other cancerorganizations to broaden their efforts to support research as well.

I dream of a day when the breast cancer movement widens the spotlight beyond celebrating survivors to shine light on those for whom the fight is never ending. That all the survivors will turn inward toward those facing metastatic breast cancer and lift them up and demand more research and support. I dream that when you think of pink you don’t think about celebrations alone, but rather a deep,vibrant pink force for change that will lead to better treatment options and improved quality of life for those with advanced disease.

I dream of a day when women no longer die of this disease… and that I live to see it.

It’s a big pink mountain, but I love a good climb!

Lara

(Please share this post and let me know any ideas for where else I can post this essay.)

#iamsusan

#notmebutcouldbe

#metup

#metsmonday

 

 

1 EuropeanCancer Journal, www.ejcancer.info/article/S0959-8049(10)00166-8/abstract

Colors of Courage

Last weekend Hope Scarves hosted our fourth annual event, Colors of Courage.  This is the biggest fundraiser of the year for Hope Scarves and an event I look forward to each year for many reasons.  First of all it reminds me each fall about the time in my life when I was just launching the organization.   The first Hope Scarves event was intended to introduce the organization to our community.  We gathered with about 150 folks in the backyard of a dear friends house.  The gathering was planned with about 10 of my friends and was a great party. The support we received that evening created momentum for Hope Scarves to become a strong nonprofit organization.  Now, four years later, we had over 500 people!  The event is still planned by The “Friends of Hope Scarves” which has grown from 10 to over 40 volunteers.

The event is intended to be a backyard get together with friends.  And even as we have grown I am so proud to have maintained this comfortable, organic feel.

This year we added a special time of reflection where we took a break from the party to remember those 56104c51a689b4f76eeef53bcurrently in treatment, especially those facing advanced stage disease.  A group of survivors – who have all either received a Hope Scarf or donated a scarf or story to Hope Scarves- held candles while my friend Carter sang a beautiful Irish blessing called “Long time Sun.”  Following this moment of reflection we held a special appeal asking our guests to consider giving directly to Metastatic Breast Cancer research.  I am so proud of our guests who in about 5 minutes gave over $15,000 to research!  Including one individual who made a $5000 challenge gift to match every gift up to $5,000!  It was humbling to look out over the guests and see the response to supporting research. I am proud for Hope Scarves to expand our mission to support research.  The event raised nearly $125,000 in all and despite the rain – was a huge success!

I am so thankful to feel good enough to pull off this big event again this year!  Moving picnic tables, rushing around to confirm auction items, networking with sponsors, coordinating volunteers – I love it!  It’s so busy (and stressful at times) and I treasure every moment!

You can see pictures from the event taken by Andrea Hughes Photography.

Hope Scarves and my personal journey are one in the same.  I’m glad to share this quick update on this big milestone and look forward to sharing more positive information about both Hope Scarves and my (hopefully) continued good health. I am so thankful to all my friends who helped pull off another great event and to our donors, guests, sponsors and more!  Our family has a lot to look forward to this fall as we continue our dance with NED… soccer tournaments, Alabama football game, trip to Michigan, girls trip with my high school BFF and more.  In a couple weeks I will run in the 200 mile Bourbon Chase – a relay race throughout the state of Kentucky.  I’m so excited to be able to run 7, 5 and 4 miles over two days.  Each step I take will be with gratitude for my health and in full awareness of those facing metastatic breast cancer.  There may be a day when I can’t run.  But today is not that day.  or tomorrow.

With my heart overflowing with gratitude,
Lara

www.hopescarves.org