A back to school supply drive

I am FINALLY hosting a fundraiser/drive benefiting Sickle Cell Disease.

 Followers of my blog already know that this is a disease that my 17 year old daughter was born with and has suffered from all her life.  I won't go into all the details of her journey. 

There have been so many agencies and organizations that have given unselfishly to our family as my daughter battled this horrible disease.  

As a family we have always discussed how we could give back.  What could we do to make life easier for families affected by Sickle Cell Disease?  Of course, we have grand ideas of an International Foundation breaking down financial barriers to treatment as well as helping families live a well lifestyle...and that is our goal...But, having grand goals can sometimes paralyze you from doing anything...

One Sunday, while watching Oprah something she said really spoke to me.  She said, "if you want to help someone, just start were you are.  It doesn't have to be grand, just start."

Hum, yeah...why not?  We can do something, it doesn't have to be grand...We just need to start.  So we brainstormed and Mini came up with the idea of donating school supplies to kids...(it doesn't hurt that Mini is obsessed with school supplies)...and I love to entertain and cook...

So, that's what we are going to do, combine our passions to help others...and we hope you guys will join us.

If you don't live in the NYC area you can still get involved by donating a backpack or school supplies for kids in K-College.  If you feel so moved...and I hope you do...Just email me... dbmore@hotmail.com and I will send you my address and you can mail your donation us.

(p.s. you get discounted pricing when shipping books through the mail...ask about it at your local post office)

This could be the start of something good.

Please join us.

Amazing Sickle Cell News

Sickle Cell News for February  2013

Could an old antidepressant treat sickle cell disease?

Tests in mice & human blood cells look promising http://www.eurekalert.org/pub_releases/2013-02/uomh-cao021913.php

 

An antidepressant drug used since the 1960s may also hold promise for treating sickle cell disease, according to a surprising new finding made in mice and human red blood cells by a team from the University of Michigan Medical School.

The discovery that tranylcypromine, or TCP, can essentially reverse the effects of sickle cell disease was made by U-M scientists who have spent more than three decades studying the basic biology of the condition, with funding from the National Institutes of Health.

Their findings, published in Nature Medicine, pave the way for a clinical trial now being planned for adult patients who have the life-threatening condition. The discovery may also lead to other treatments for the disease, which leads misshapen red blood cells to cause vascular damage and premature death.

But the researchers caution it is too soon for the drug to be used in routine treatment of sickle cell anemia, an inherited genetic disease that affects tens of thousands of Americans and millions of others worldwide.

The climax of a decade of discovery

In the new paper, the researchers describe a painstaking effort to test TCP's effect on the body's production of a particular form of hemoglobin – the key protein that allows red blood cells to carry oxygen.

The drug acts on a molecule inside red blood cells called LSD1, which is involved in blocking the production of the fetal form of hemoglobin. The U-M team zeroed in on the importance of LSD1 as a drug target after many years of research.

Then, they literally did a Google search to find drugs that act on LSD1. That's how they found TCP, which since 1960 has been used to treat severe depression.

In the new paper, they describe how TCP blocked LSD1 and boosted the production of fetal hemoglobin -- offsetting the devastating impact of the abnormal "adult" form of hemoglobin that sickle cell patients make.

"This is the first time that fetal hemoglobin synthesis was re-activated both in human blood cells and in mice to such a high level using a drug, and it demonstrates that once you understand the basic biological mechanism underlying a disease, you can develop drugs to treat it," says Doug Engel, Ph.D., senior author of the study and chair of U-M's Department of Cell & Developmental Biology. "This grew out of an effort to discover the details of how hemoglobin is made during development, not with an immediate focus on curing sickle cell anemia, but just toward understanding it."

Engel credits the dedication and persistence of his team, including a former research assistant professor, Osamu Tanabe, M.D., Ph.D., now at Japan's Tohoku University, U-M postdoctoral fellow, Lihong Shi, Ph.D., first author of the study, and research instructor Shuaiying Cui, Ph.D..

Together, they have identified LSD1's crucial role, and its epigenetic interaction with two nuclear receptors in the nuclei of red blood cell precursors called TR2 and TR4. Working in tandem, they repress the expression of the gene that makes fetal hemoglobin – an effect called gene silencing. So, interfering with this repression allows the fetal hemoglobin subunits to be made.

Treatment with TCP caused fetal hemoglobin to be produced at such high abundance that it made up 30 percent of all hemoglobin in cultured human blood cells – a finding Engel called "startling." TCP is FDA-approved, though patients taking it need to follow strict dietary guidelines to avoid drug interactions with certain naturally occurring chemicals in some foods.

Reference: Nature Medicine, http://dx.doi.org/10.1038/nm.3101

I have always felt that the cure/treatment for Sickle Cell would come from a discovery like this.  Where researchers find out that a drug being used for some common disease has a side effect that cures sickled cells...I pray that this is it.

My daughter...this week...2 years post bone marrow transplant...and going strong.

National Donor Day

Today, February 14th is National Donor Day...

Mini is 3 years post her un-related bone marrow transplant curing her of Sickle Cell Disease and would love to say "Thank You" to her donor...

who has not given us permission to contact him yet...sad face.

We look forward to the day that happens...and we know we will meet the person who changed my daughter's life...until then...We just want to share this with him to express our gratitude...

To our HERO.

 Mini, 2 years ago...in transplant...

Mini today, 2 years post transplant...

Please, become a bone marrow donor it could CHANGE a Life...

To learn more click here.

The Flu is Here

So...Mini ran a fever last week. We ended up in the hospital for a blood work and a round of IV antibiotics...just in case...Two days of that and mini still had a temperature of 102.8....ugh!

Mini was finally diagnosed with the flu after an evening run to the ER...we were sent home with a prescription for Tamiflu....and isolation.

So...Mini cannot return to school until she has been without fever for 24 hours...I had to reschedule Mini's MRI...hopefully she will be well enough to take a scheduled neuro-psych exam next week....Ugh! Last week was just a quick reminder of the life we used to live before Mini's bone marrow transplant...not fun.

Here's your chance to help...

The Starlight Foundation is an organization that brings smiles and sunshine into the lives of sick children every day. ...Now we have a chance to help them...just by using your computer...Chase Bank is offering $50,000.00 to the charity with the most votes...that's a lot of stuffed animals, parties, and outings...the kids live for this stuff...

please click here to vote for Starlight Children's Foundation.  If you DO NOT have Facebook, but you ARE a Chase customer, you can still vote by visiting www.ChaseGiving.com. The one moment it takes you to vote could help create lifelong memories for seriously ill children. As a reminder, Chase Community Giving is a program where YOU decide which charities receive millions of dollars in grants from Chase. But, only the top 196 will receive anything. YOU can help us win $50,000!

The one moment it takes you to vote could help create lifelong memories for seriously ill children. As a reminder, Chase Community Giving is a program where YOU decide which charities receive millions of dollars in grants from Chase. But, only the top 196 will receive anything. YOU can help us win $50,000!  Once you have voted, please ask your friends and family to do so as well.  There is so much we can do with $50,000 to help seriously ill children. We thank you again. Your support is greatly appreciated.

World Sickle Cell Day

Author Judy Johnson Joins Call for Observing World Sickle Cell Day

Fourth Annual World Sickle Cell Day is June 19, 2012

• 

The cover of Living With Sickle Cell Disease: The Struggle to Survive

What is sickle cell disease? Sickle cell disease is one of two types of hereditary disorders – the other is thalassemia – involving hemoglobin, the protein within red blood cells that carry oxygen to body tissue.

Alexandria, VA (PRWEB) May 31, 2012

Judy Johnson, author of Living With Sickle Cell: The Struggle to Survive, is joining the call to observe June 19, 2012 as the fourth World Sickle Cell Day.

World Sickle Cell Day is the centerpiece of a 2008 United Nations resolution that declared sickle cell disease as a global public health problem that requires heightened awareness, activism, diagnosis and management.
In concert with the United Nations, the World Health Organization (WHO) promotes a worldwide agenda to address the disease. Sickle cell disease affects an estimated 90,000 to 100,000 Americans, according to the U.S. Centers for Disease Control.

What is sickle cell disease? Sickle cell disease is one of two types of hereditary disorders – the other is thalassemia – involving hemoglobin, the protein within red blood cells that carry oxygen to body tissue.

Red blood cells become hard and sticky and look like a C-shaped farm tool called a sickle. The sickled cells die early, which causes a constant shortage of red blood cells. In addition, the cells get stuck and clog blood flow as they travel through small blood vessels, which can cause sufferers severe pain and other serious problems such infection, acute chest syndrome and stroke. By contrast, healthy red blood cells are round, and they move through small blood vessels to carry oxygen to all parts of the body.

Regarding sickle cell disease worldwide, WHO has made a commitment to: 

•     Recognize that sickle cell disease is a major health issue.
•     Increase awareness of the world community regarding sickle cell disease.
•     Eliminate harmful and wrong prejudices associated with sickle cell disease.
•     Urge member countries where sickle cell disease is a public health problem to establish health programs at the national level and operate specialized centers for sickle cell disease and facilitate access to treatment.
•     Promote satisfactory access to medical services to people affected with sickle cell disease.
•     Provide technical support to all countries to prevent and manage sickle cell disease.
•     Promote and help research to improve the lives of people affected with sickle cell disease.

The World Sickle Cell day is observed worldwide through media campaigns, music shows, cultural activities, and talk shows. The observance also emphasizes educating medical professionals, care givers, and associated personnel about prevention, research, and resources to minimize the complications due to sickle cell disease.

Like World Sickle Cell Day, Judy’s Living With Sickle Cell Disease: The Struggle to Survive also aims to educate medical professionals about the illness. Describing her memoir as a book she “had to write,” Judy took on her daunting project amid her mounting anger over facing repeated instances of insensitive treatment from emergency room doctors and nurses as she sought relief from severe pain episodes brought on by sickle cell disease.

The result is a vivid description of how Judy lived her life while enduring the incurable pain and fatigue. Living With Sickle Cell Disease: The Struggle to Survive is available in hard cover, paperback and e-book versions throughhttp://www.lulu.com. Her book is also available through Apple’s iBookstore. Readers also may visit Judy’s website at http://www.judygrayjohnson.com.

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You can help...

Text BREAK to 52000 

to make a $10 donation to the Sickle Cell Disease Association

Check up...

...Mini and I were back at the hospital yesterday...for an MRI and check up...

 ...as most of you know, Mini had a bone marrow transplant from an unrelated donor curing her of Sickle Cell Disease in January 2011.

 ...what you may not know, bone marrow transplants are very complicated and dangerous procedures...the most dangerous period is after receiving the bone marrow.  Mini had two rounds of chemo which totally knocked out her immune system.  Leaving her open to all types of infections and illness that our bodies usually fight off...

...even her immunizations were knocked out...so, yesterday she got her second round of immunizations...just as a new born baby would...We began the paperwork needed to finally meet her donor.  Hopefully this will happen before the end of the year.

Mini also had an MRI of her brain...I remember her first MRI...she was so little they had to put her to sleep just to keep her still...yesterday she went into the tube 30 minutes, all alone...All I could think was how far she has come...with the grace of GOD!  ...and he is not done yet...GOD is still showing off when it comes to Mini...smile.

As for me, being in the hospital all day yesterday really bought on a lot of anxiety.  How did I do this every 3 weeks for the past 8 years?  Exhale.

Free IHOP Pancakes To Encourage Donation To Children's Miracle Network Hospitals

Free IHOP Pancakes To Encourage Donation To Children's Miracle Network Hospitals

Did you get your pancakes?

...Mini spreading the word via facebook that she will be on the news

 Random images...I didn't get the chance to take photos during the interview...

 ...Mini in the stripes, taking shots of the news lady filming her segment.

 ...they sent a car for us...yep...Beyonce style...Mini made it to school on time...Man, do you know how much I could get done if I had a driver everyday?  I'm just putting it out there.

You can watch the video here...

...It was a great way to start the morning...but, the reason for the day is never far from my mind...

Mini was blessed with the perfect donor...not everyone is so lucky...just read the letter we received just yesterday from the mother of a 10 year old girl who suffers from Sickle Cell Disease...

I appreciate your getting back to me.  It's my 10 year old daughter who is suffering from Sickle Cell...we're trying to find a bone marrow donor for her.  I would love to keep in touch with you & get to know you.

I think it would be a tremendous help mentally for my daughter (Kelsie) to know that you have suffered through the same thing...but that you have now been cured.  It will give her real hope.  Your story is a tremendous help to me as well.  Through you...we can now see a brighter future & know that this horrible disease & all of the suffering is going to end one day very soon...as soon as a match becomes available.

My faith is stronger...thanks to God...and YOUR story.  Thanks for sharing your story with the world.  I KNOW a match will be found very very soon!

Kelsie actually asked if she could meet you & I told her I wasn't really sure.  If it's okay with your mom...I'll keep in touch...and maybe one day in the future...you, your mom, me & Kelsie can meet.  

Kelsie is so happy for you too...and even without ever meeting her, you've already done something tremendously wonderful for her. You've given Kelsie hope, and that's something you cannot put a price on!

  

Thank you so much for that. Thanks for sharing your story with the world...and thanks for being gracious enough to respond when hearing of another child in need.  Please show your mom this message & keep her updated on our correspondence.  Your  mom can feel free to call me 

Again...thanks for everything.

Thank you

Click here to learn more about becoming a bone marrow donor...

Get Your Free Pancakes...

Tomorrow is National Pancake Day at IHOP restaurants nationwide.

Since beginning its National Pancake Day celebration in 2006, IHOP has raised nearly $8 million to support charities in the communities in which it operates. On February 28, 2012, guests from around the country are invited to celebrate National Pancake Day at IHOP and enjoy a free short stack of Buttermilk pancakes.* In return for the free pancakes, guests are asked to consider leaving a donation for Children's Miracle Network Hospitals© and other designated local charities....remember when I talked about it here last year?  

Well, well, well...just imagine what a difference one year can make in your life.  Last year I blogged  about how Mini and I would love to be there but, she was still under isolation from her bone marrow transplant and could not go outside or eat prepared foods.   Hold onto your seat as I manifest, tomorrow Mini and I will be there.  Not only will we be there, Mini will be interviewed live at IHOP during our local morning news broadcast!  I know, I know...sigh.

...but wait, there's more...

Mini has been named CCMC Champion Child of the Year!

As such, Mini will  represent her hospital at events, openings or anything else that may come up over the year.   

 My little girl has been on some journey.  She has done and experienced enough for 10 lifetimes.  I won't go into all that now...like I've done before.  I'll just say,  I could not be prouder.

So, get out there tomorrow...take the kids for some pancakes and leave a little donation for all the kids who can't be there because they're in the hospital or home sick...and think of Mini and how each donation is making kids stronger everyday...

If you want to watch Mini on the news tomorrow, her segment is scheduled for 7:40 a.m. on WPIX, Channel 11 in NYC.  I'm not sure if you can watch live on the computer.  You can find out by going to their website.

 

...for all the natural hair sisters out there...this is Mini's natural hair, one year after being completely bald...and Mini wanted me to shout out her cousin, Sandra, who treated her to a day at the salon for this new hair do...thanks cus.

Revenge of the Nerds

Happy Halloween!

Mini as "Revenge of the Nerds"

Quick update...

I just wanted to check in with the blog...I know it's been a while since we've posted here...medically Mini has been stable...she's gone back to school and is doing AMAZING!  A's and B's in every subject...and she loves school...she works hard...and she get's it...It has been a loooooong educational journey as well... you may or may not know that Mini had two strokes and two brain surgeries when she was 6 & 7 at which time she was diagnosed, dyslexic...the doctors are not sure what came first.  Mini attends an amazing school for kids with LD...where the entire staff is invested in the kids success.

This photo was taken two weeks ago when Mini and I went to the Bronx Zoo.

The New York Times did a nice piece on Sickle Cell Disease back in March of 2011.  They have audio of people discussing how they live with their disease...and parents discussing how they deal with their kids disease.

CLICK HERE to listen.

It's coming up on the one year anniversary of Mini's transplant...and we will finally find out who her anonymous donor is...excited!!

Mini had a doctor's appointment today

Mini self portrait...just another day on the school bus.

Mini had a doctor's appointment today.  Her first in 2 months.  Everything seems to be going well.  Mini's hemoglobin was 14.3 today.  WOW!  (hootie - hoo...an inside joke between me and Mini) When Dr. B gave us the good news, my first thought was, "oh man, wait until I tell my mom." ...Second thought, "wait, she's no longer here"...I almost broke down right there in the doctors office...During my mother's battle with her own illness, we would compare her hemoglobin with Mini's...Sigh...My mom would be beside herself to hear what Mini's levels are today.  Before transplant, Mini's hemoglobin hovered around 8 and 9...and today...just 9 months after transplant it is 14.3...NORMAL.


Hemoglobin in the blood plays a very important role in the daily functioning of the body. It's something most of us take for granted...Not someone with sickle cell...they don't have that luxury.  So, what is hemoglobin? Hemoglobin is a type of protein, which is present in the blood. We all know that the oxygen we breathe in, is carried to all the cells in the body by the blood. The actual work of carrying the oxygen to the rest of the body is done by hemoglobin. Thus, we can see that hemoglobin is quite a utile substance. Scientifically speaking, hemoglobin is a metalloprotein in the red blood cells and contains iron. Thus, it can be logically inferred that an iron deficiency, will reduce the hemoglobin levels in the body.


Fatigue is one of the most common symptoms of low hemoglobin levels. If your hemoglobin level is low, your cells will not get enough oxygen to fuel their activities and you will feel very tired. When enough oxygen does not reach the cells in the body, the heart has to pump harder than usual, (this happened to Mini...she had an enlarged heart) to ensure that adequate amount of oxygen reaches the cells. Hence, if you over-stress the heart for a long time, a person with a low hemoglobin count, risks the chances of heart disease. So, you see even with transplant you never know exactly what damage having sickle cell has done to your body. Other problems associated with lower than normal hemoglobin levels, include shortness of breath, loss of skin color, anemia and fainting.


THIS CHART LIST NORMAL HEMO LEVELS FOR EVERYONE

Age Group	Hemoglobin Count (gm/dl)
Normal Hemoglobin Levels in New Born Babies	17- 22
Normal Hemoglobin Levels in Children	11-13
Normal Hemoglobin Levels in Adults (Male)	14-18
Normal Hemoglobin Levels in Adults (Female)	12-16
Normal Hemoglobin Levels in Elderly (Male)	12.4-14.9
Normal Hemoglobin Levels in Elderly (Female)	11.7-13.8