Get involved! Rare Disease Day!!

RDD_whiteRare Disease Day®: February 29th, 2016

Rare Disease Day® takes place on the last day of February each year. The main objective of Rare Disease Day is to raise awareness amongst the general public and decision-makers about rare diseases and their impact on patients’ lives.  Learn more about the history of Rare Disease Day.

The 2016 global theme, “Patient Voice,” recognizes the crucial role that patients play in voicing their needs and in instigating change that improves their lives and the lives of their families and carers.

The National Organization for Rare Disorders (NORD) is the official Sponsor of Rare Disease Day in the United States alongside its sister organization, EURORDIS (The European Organization for Rare Disorders), which organizes the official international campaign.  Over 80 countries participated in Rare Disease Day 2015.  To learn what’s happening around the world, visit the global Rare Disease Day website at

Anyone can get involved in Rare Disease Day awareness.  On this particular site, U.S. participants can find, suggest and get involved in events taking place across the country.  There are also suggested activities for those who are new.

Join the conversation on Facebook, Twitter and Instagram! Use the hashtag #RareDiseaseDay to help make the day trend worldwide again this year!


October – Domestic Violence Month


Domestic violence, for the most part, is about control. Abusers can control their victims using many different tactics, such as:

  • Isolation from family or friends
  • Emotional abuse (mind games, name-calling or put-downs)
  • Economic abuse (withholding money or preventing the victims from having money)
  • Intimidation
  • Sexual assault
  • Actual or threatened physical harm

Domestic violence is never okay, yet it is an epidemic that impacts individuals in every community regardless of age, race, gender, religion, economic status or educational background.

Know the Warning Signs

Someone who is a potential victim of domestic violence may exhibit the following signs:

  • Constant complaints about aches and pains
  • Unexplained cuts or bruises
  • Not allowed to use the phone
  • Forbidden from seeing friends unless partner is present
  • Little or no control over household finances
  • Not allowed to make decisions or get a job
  • Absenteeism from work
  • Withdrawal from social situations

What to Do If You Are a Victim of Domestic Violence

Many domestic violence victims don’t know what to do or where to turn when their loved one has hurt them. If you are a victim of domestic violence, remember that it’s not your fault. You can protect yourself if you:

  • Call the police. Assault, even by a family member, is a crime. Law enforcement representatives oftenhave information about shelters and organizations that can help you.
  • Get medical attention. Visit your doctor or a hospital emergency room. Keep detailed records and photograph your injuries. You may need evidence if you take legal action.
  • Leave your home or have someone come and stay with you. You can go to a shelter or call a crisis hotline. If you believe that you and your children are in danger, leave immediately.


Do I Really Want a Pet?

puppymessSo I am thinking about getting a pet.  I have narrowed it down – I’m a dog person.

Fish are too boring, lizards are too lizardy, and cats are sneaky and stuck up.  That’s how I see it anyway.  But I guess my main concern is how do you keep a clean house and a pet?  I have walked into one person’s house and smelled wet dog even before I crossed the threshold, but on the other hand, I’ve gone to another person’s home and didn’t even know there was an inside pet there at all.  What was the difference?

In hunt for the answer, I found some great information for those of us contemplating becoming dog owners.  These are a few tips that I thought were helpful:

  • Think seriously about the breed you want.  For instance, some dogs shed very little, think Labradoodles and Schnauzers, while others, such as the Akitas and Siberian Huskies, have so much fur they are what the vet world calls “double-coated.”  And remember, April and September are typically the shedding months.
  • Ideally, all breeds should be brushed a few quick times each week.  Better to do it beforehand and a little along versus after fur starts to fall everywhere and only once in a while.
  • To avoid cleanup, it is best to brush your dog outside.
  • On the norm, bathe your dog at least once a month.  Any more would disturb the natural oils in their skin.
  • Keep your dog healthy.  Nothing like cleaning up dog puke.  Yikes!
  • Keep pet food in covered containers.  This will to ward off unwanted pests and rodents.
  • Decide which parts of the house your dog is to share with you.  Be firm about this.
  • Have specific feed times and places.  But if you will be gone all day, leave out water and dry food only. 
  • And lastly, if you have white carpet on your floors and woven fabric on your sofas, you might want to think twice about a dog.  It’s going to be mad crazy to keep clean.  But for those of us with hard wood floors, tile, and leather or vinyl sofas, we have a more doggy-proof home.

In the end it’s like anything else, if you want it, you’ll make the adjustments.  Me?  I don’t know…still on the fence, but at least now I’m more informed.


National Child Abuse Prevention Month

logo-guideApril is National Child Abuse Prevention Month.  This month and throughout the year, the US government encourages all individuals and organizations to play a role in making all communities a better place for children and families.  By ensuring that parents have the knowledge, skills and resources they need to care for their children the National Child Abuse Prevention Month helps promote children’s social and emotional well-being and prevent child maltreatment within families and communities.

Research shows that when parents possess six protective factors, the risk for neglect and abuse diminish and optimal outcomes for children, youth, and families are promoted.  The six protective facts are:

Nurturing and attachment

Knowledge of parenting and of child and youth development

Parental resilience

Social connections

Concrete supports for parents

Social and emotional development well-being

April is a time to celebrate the important role that communties play in protecting children.  Everyone’s participation is critical.  Focusing on ways to build and promote the protective factors, in every interaction with children and families, is the best thing our community can do to prevent child maltreatment and promote optimal child development.

Rare Disease – One Small Way to Fight for Big Cures

provided by RDD Campaign

provided by RDD Campaign

I thought this was the greatest idea!  There are approximately 30 million Americans that are affected by rare disease according to the Rare Disease Day USA website.  But Lundbeck – a pharmaceutical company committed to the development of innovative therapies for patients with neurological and psychiatric disorders – has pledged that for every click on the Make a Difference button on the Rare Disease Day USA website, they will donate a dollar.

Why?  Because February 28, 2015 is Rare Disease Day.  You still have a few days to join in the fight by clicking here and then clicking the Make a Difference button.  So what are you waiting for?

Alone we are Rare. Together we are Strong.

Heroes of Black History Month

For all the history geeks out there, Black History Month provides another opportunity to look into the lives of people that lived, made a change, and gave us all hope.  While researching who I wanted to write about this February I was amazed at how many ordinary people took drastic measures to reach their goals.

Mr. and Mrs. Craft

craftsThe first persons who struck my attention were Mr. and Mrs. Craft – William and Ellen, respectfully.  These two were slaves living in Macon, Georgia in the 1800’s.  Ellen was mixed-race (her father was her first master and her mother was bi-racial) and William was a cabinet maker at the time.  Both lived on different plantations and could only see each other if the masters gave them passes or permission slips.  Long story short, William concocted a plan for his wife to disguise herself as a white man traveling with his slave, of whom he would play the part.  They had many close calls, but made it all the way to Philadelphia safely.  Even after reaching freedom, the two were not completely out of harm’s way.  They had to run away to England after only two years due to slave hunters trying to trek them down.  However, they were able to return to the US after 20 years and subsequently opened a school in the 1870’s in Georgia for newly freed African Americans.

Now that’s motivation and determination.

Bessie Coleman

BessieColemanThis story makes my heart sing.  Bessie Coleman was one of 13 children living in Atlanta, Texas in the late 1800’s with her mother and father.  In this family, as soon as you got of age, you made it your business to help or at least take care of yourself.  So, after several job attempts and an abrupt withdrawal from college due to lack of funds, Bessie moved to Chi-town.  She soon started hearing about the adventures of World War I pilots.  Of course, because she was an African American woman, entrance was closed to her, but this didn’t stop her.  She simply taught herself French and entered France’s well-known Caudron Brother’s School of Aviation.  This provided her the opportunity to make a living doing stunts and aerial shows.  Even though – due to a rehearsal stunt gone wrong – she had a brief life (1892-1926), she set the bar and remains a pioneer in the field of aviation today.


Dr. Rebecca Lee Crumpler

crumplerAnother one of my newly-founded sheroes…Dr. Rebecca Lee Crumpler.  She was the first African American women to earn her M. D. degree.  Okay, how about it was in 1864, ya’ll?!??  This was in part due to the example of her loving aunt who raised Dr. Crumpler as well as helped neighbors when they fell sick.  After the Civil War, Dr. Crumpler assisted other black doctors for the time; the purpose of this endeavor was to help as many freed slaves since they would not have gotten the necessary medical attention otherwise.  In 1883, she published a book based on her journal notes.

Can somebody say girl power?


October – Domestic Violence Awareness Month

DV logoI thought about something the other day that I had not thought about in a while. I remember seeing a young man slap his girlfriend.  The reason?  She evidently stayed in the restroom too long.  People, we were in Jr. high school so that put us between the ages of 12-15.

Consequently, October is Domestic Violence Awareness Month with good reason then.  The National Coalition Against Domestic Violence (NCADV) states, “On average, nearly 20 people per minute are victims of physical violence by an intimate partner in the United States.”  And no, this does not include women only because NCADV continues, “During one year, this equates to more than 10 million women and men.   One in 3 women and 1 in 4 men have experienced [some form of] physical violence by an intimate partner within their lifetime.”  And lastly, “1 in 5 women and 1 in 7 men have experienced severe physical violence by an intimate partner in their lifetime.”

Clearly, this is an epidemic. So much so that I wanted to get information from someone who has a bird’s eye view of this issue.  I interviewed Michelle Allen, a Child Protective Service Assessment Worker from the Memphis and Shelby County Department of Children’s Services.  She has 13 years of experience in case management. And even though the following information is slanted to when the perpetrator is male, as we discussed earlier, the perpetrator can be female.

Michelle, what are the main reasons why men hit women?

Many times a man could have been exposed to a violent environment growing up and now believes this is the way women should be treated. Other times, the man involved has severe anger, mental health, or substance abuse issues.

Why does domestic violence have little to do with economics, education, or intellect?

Because low self-esteem or lack of confidence has no boundaries. Traditional norms of how the person was brought up or raised are key factors as well.

Why does it seem harder to leave an abusive mate the longer a woman stays?

It may be financial reasons (he controls the money). Additionally, the woman may not have work skills, a driver’s license, or even transportation.  Other reasons may include: emotional abuse or suppression, physical abuse, low self-esteem, she has been cut off from her support (family/friends), and just wanting to stick it out for the kids so they can grow up with a father.

Lastly, how can a woman identify early in the relationship that the man is manifesting traits of an abuser?

The woman should become familiar with his background. For instance, what kind of relationship does he have with his mother?  Does he have overly controlling behaviors?  Is he jealous?  And it may sound odd but try to be objective when the man ‘seems too good to be true.’

For those who are suffering in an abusive relationship, please reach out for assistance. If you have no one you can personally turn to, then call the National Domestic Violence Hotline at 1-800-799-SAFE (7233).  And for those of us who are not in an abusive relationship, remember these tips for not only yourself but for others in need as well.