St. Baldrick's Foundation

Highlighting St. Baldrick’s Foundation is a good segue into March as it is a charity that involves sacrifice and love with a little bit of green.  What is St. “Bald”-ricks?

The big picture: “St. Baldrick’s Foundation is a volunteer-driven charity committed to funding the most promising research to find cures for childhood cancers and give survivors long and healthy lives” (www.stbaldricks.org).  The interesting piece is how it acquires the means to fund.

The first time I heard of St. Baldrick’s Foundation was two years ago when my cousin and aunt organized and hosted a St. Baldrick’s event at their place of business, Inside the Bungalow.  They scheduled the event a couple of months in advance and immediately started promoting the event, recruited volunteers and “shavees” and began the fundraising.  When the event took place, volunteer “shavers” shaved the heads of the volunteer “shavees” who met their fundraising goals.  It was really amazing to witness all of these men, women and children having their heads shaved for a cause they believed in.  My cousin Carrie was truly bald and beautiful! 

Often times, businesses and/or teams have competitions, trying to see who can raise the most funds.  Women seem to be pretty successful in achieving their goals as they have to shave their head as a consequence. 

Currently, there is a local competition taking place for an event scheduled on March 12, at an Irish Pub called Skeptical Chymist.  For this event, there are 30 “shavees” and a long list of children with whom they are honoring.  I had the pleasure of talking with a “shavee” for this event and she told me her six year old son is one of the children being honored as he is a cancer survivor.  He started his treatment when he was 13 weeks old and continued the therapy for 19 months.  He is now cancer free!  When I told Cara I thought she was brave for volunteering to have her head shaved, she laughed and said she had heard that a lot but it was nothing compared to what the children have had to go through.   

The website is very easy to navigate and lists events taking place in your area.  You can also find out more information about the participants and the children being honored:  http://www.stbaldricks.org/

         

How can we get involved?: 

-Check out the “Get Involved” tab on their website!

-Besides shaving our heads, there are many ways to volunteer and support St. Baldrick’s Foundation.  For example, I can volunteer to pass out t-shirts at an event taking place in my area. 

-Support one of the “shavees” by donating online.  Cara has $5,000 as her goal and is currently at $1,500 as of this morningJ

(To support Cara, from the homepage go to “find a participant” and then type in “Cara Hughes.”)

-Organize an event!

“Although the world is full of suffering, it is full also of the overcoming of it.” ~Helen Keller

Chromosome 18 Registry and Research Society

When I first came up with the idea for this blog, I wrote to all of my friends and family, asking them to give me ideas for charities that are near and dear to their hearts.  I also stated I was especially interested in ones “you wish more people knew about.”  One of the first responses I received was from my great friend, Nora.  Because this charity is very near and dear to Nora and her husband Eric’s heart, I asked if they would please help me with this post.  Eric and Nora sent me the following:

"Your son has a rare chromosomal abnormality called 18p Deletion Syndrome.  He probably won't ever walk, talk or live independently.  He will have severe mental retardation.  Sorry to be the bearer of bad news, but I don't know much more about it."

With that, the doctor handed us a photocopy from a medical journal outlining our son's syndrome, as well as photos depicting severely disabled and disfigured children affected by other syndromes, and she walked out of the room.  It goes without saying that our world changed in an instant.

We knew something was wrong; there were pre-natal complications and warning signs in his ultrasounds, but nothing definitive. By just four months of age our son had already endured neurosurgery to correct a cranial abnormality as well as open heart surgery to repair a hole in his heart.  He also had a number of lesser issues that would need to be addressed.  In the first 18 months of his life, he endured ten surgeries and well over a million dollars in insurance claims.  But it wasn't until we were advised of his diagnosis - 18p Deletion Syndrome - that we knew what was causing it.  Sadly, the geneticist who gave us the diagnosis knew nothing more. 

We were on our own, literally and figuratively.  We felt devastated and alone.

Naturally, we turned to the Internet and quickly found the Chromosome 18 Registry and Society, an organization based in San Antonio that focuses on abnormalities related to the 18th Chromosome.  Its sole purpose is to help people afflicted with chromosome 18 disorders to live happy and productive lives.  While no organization could "fix" our son's problems, at least we finally had a support system and a place to turn for guidance.  The Chromosome 18 Registry quickly provided us with information needed to successfully petition our insurance company for experimental growth hormone treatment that, while unproven, was showing some signs of helping kids with our son's condition to make progress in the areas of intellectual and physical progress.  Without insurance coverage, this experimental treatment would have cost in excess of $100,000 per year.

The Chromosome 18 Registry and Society also organizes an annual conference which features an array of specialists in the areas of Chromosome 18 abnormalities, as well as updates on research and therapies that are benefitting other individuals with this condition.  Most importantly, the organization exists to let parents know that they aren't alone.  It is important to recognize that while cancer, autism and other "mainstream" diseases garner the majority of the research funding, there are many children affected by rarer conditions that receive almost no funding at all.

Nearly five years later, we now know that we aren't alone.  Our son is thriving.  While he still shows cognitive and physical delays relative to other kids his age, he walks, talks and lives a happy life.  Beyond our wildest dreams, he will be entering a "normal" kindergarten in August.  Much of his success comes from hard work: seemingly endless physical, occupational and speech therapy, early intervention and support. 

Without the Chromosome 18 Registry and Society, we would have been on our own.  Now, we're moving forward.

If you would like more information about Chromosome 18, please check out the following link:

http://www.chromosome18.org/Home/tabid/55/Default.aspx

How can we get involved?:

These are the items listed on the website for how we can help:

·         Visit the website

·         Become a member of the organization

·         Tell others about the organization (this is super important and easy to do)

·         Be a sponsor at the following levels:

“contributor”- $1 to $99, “benefactor”- $100 and above

·         Donate an item to the Annual Silent Auction

·         Participate in the Annual Golf Tournament

·         Participate in the Annual Run for Research

·         Contribute through United Way Donor’s Choice Program

·         Hold your own fund-raiser!

Making the decision to have a child is momentous.  It is to decide forever to have your heart go walking around outside your body. ~Elizabeth Stone

Chromosome 18 Registry and Research Society has been the answer to many parents’ prayers.

Karma Yoga Project

“Breathe in, I'm calm. Breathe out, I'm smiling”

When the founder of Karma Yoga Project (KYP), Donna Helm-Yost and I worked together, she would tell me to say that as a mantra when I was having a rough day.  It works, try it!

Karma Yoga Project is a non-profit organization in which Donna uses her time and talents to make a difference locally and globally.  She represents well her phrase “Practice Yoga, Change the Planet.”  That is what Karma Yoga Project (KYP) is all about. 

Donna’s practice of yoga goes beyond the studio.  Donna teaches classes all over the valley in exchange for donations for local and global causes.  She also started a program for high school students called the Good Karma Club.  The students choose charities of interest and volunteer their time or spearhead fundraising efforts to raise money for the cause of their choice.

Globally, KYP partnered with Beyond the Orphanage (BTO) to help orphaned children, ages 10-18, in Addis Ababa, Ethiopia.  How does KYP help?  Along with being a certified yoga instructor, Donna has her doctorate in psychology.  A few years ago, her path crossed with the man who started BTO.  She offered to help his cause by sharing her talents as a yoga instructor and psychologist and the partnership began.  Donna's first trip to Ethiopia was in 2008, now...

I leave in 4 weeks to go see them again. I'm now going twice a year--March and July--and while there, I teach them yoga, conduct home visits to make sure that they're bonding with guardians and to assist with any problems, and I teach them strategies for dealing with stress and sadness. I visit their schools while I'm there in March and speak with their teachers about how they're doing. The great thing is that I get to really develop a relationship with the kids over time. I'm very lucky!! ~Donna

It only takes one caring person to help a child learn resilience.  How lucky these children are to have Donna!

To learn more about the study Donna is conducting for BTO and/or to learn more about Karma Yoga Project, check out the website and sign up for their newsletter:

http://karmayogaproject.org/

How can we get involved?:

Locally:

-Volunteer opportunities are available at KYP events.

-Do you write well?  On the KYP blog, Donna asks for help with keeping the blog and newsletters updated.

-Attend one of the events Donna hosts around the valley.  Her classes are awesome!

Globally:

-Check out KYP’s merchandise.  The “Love Here Now” shirts are beautiful and 100% of the profits support KYP's efforts with orphans in Ethiopia.

-Buy a DVD of Donna’s practice.  I have it and it's AWESOME!  There is a 45 minute flow session along with a 70 minute yin sequence...I love it!!!!

-Donate to KYP or BTO.

This quote is found on the KYP website and I love it because it is so true!

 “How wonderful it is that nobody need wait a single moment before starting to improve the world.” ~Ann Frank

Maggie's Place

I remember the birth of Maggie’s Place.  Before I left for the Peace Corps, I met this very impressionable woman who worked at the Andre House.  About a year later, while I was in Russia, I received this newspaper clipping from my dad about these five women (around 25 years old) who started a home of hospitality in Phoenix for pregnant women who were homeless and alone.  I recognized one of the five women in the photograph as that cool lady I had met.  I was just amazed by what those women were doing. 

Maggie’s Place now consists of four homes:  Magdalene (Phoenix, AZ), Elizabeth (Tempe, AZ), Michael (Glendale, AZ) and Zecharia (Ohio).  In these homes, expectant moms live and receive constant support during their pregnancies and are able to stay until their infants are 6 months old.  In the future, the moms may have the opportunity to transition into affordable apartment complexes also owned by Maggie’s Place. 

This charity is definitely one of my favorites.   It has been so neat to watch it grow!  I’ve been in two of the three houses in Arizona and they really are beautiful.   

If you want to know more about the history of this organization and learn about how they are able to do what they do, check out this link:

http://www.maggiesplace.org/

How can we get involved?:

If you have the time, they are always looking for volunteers. 

If you have a ton of baby stuff you are no longer using and you haven’t already sold it on Craig’s List, given it away to the Salvation Army or passed it down to the Stinchfield sisters, please donate it to any of the homes. 

If you don’t have any baby items but you want to help, each house has a needs list located on the website. 

The Maggie's Place 9K run will be at Cleveland Zoo, Ohio, on August 27 and at the Art's Park in Tempe, AZ, on October 16. 

Right now, they are selling bricks as a fundraiser.  If that sounds unusual, check out their website...

One woman’s gently used baby goods are another woman’s treasure!  I know this from experience.  You know who you are you wonderful donorsJ