Run for Hospice - 13th Annual Run & Fun Walk
April 19th, 2008
Leonardtown, MD

The Menkes Foundation had the largest team for the 13th Annual Hospice 5K, 10K and Fun Run in Leonardtown, MD with 52 participants.

With the support of friends, family and coworkers of Drew and Jamie Eckman, co-founders of the Menkes Foundation, $1275 was raised in support of Hospice and $200 went towards our awareness campaign for Menkes Disease.

To see more pictures of the event click here.
If you would like to find out more about the run or Hospice of St. Mary's visit www.runforhospice.org.

Menkes Foundation featured in St. Mary's Ryken High School Alumni newsletter
March, 2008

The Alumni newsletter of St. Mary's Ryken High School featured an article about the Menkes Foundation. As co-founder of the foundation and a Ryken Alumni Ryken, Drew Eckman recently shared his story with the school. To read the article click here. To find out more about St. Mary's Ryken High School visit www.smrhs.org.

Menkes Screening Test Developed for Infants
Screening could identify newborns at risk for rare Menkes disease
February, 2008

BOSTON - Doctors say they have developed a screening test for deadly Menkes disease so patients with the genetic defect can receive copper injections.

A team led by Dr. Stephen Kaler of the National Institute of Child Health and Human Development in Bethesda, Maryland, said the test identified 46 out of 81 infants at risk for the rare condition, which causes seizures, stunted growth, mental retardation and kinky hair.

Twelve of the 46 began receiving copper-replacement therapy within three weeks of birth, the researchers reported in the New England Journal of Medicine. They said 92 percent were alive after nearly five years. Historically, fewer than 13 percent are alive after two years if treatment has been delayed. Menkes disease is often missed because normal newborns also can have low copper blood levels.

In addition, affected infants appear healthy at birth and they do not begin to develop symptoms for six to eight weeks. By then it can be too late for daily copper injections to be effective.

Source:

http://www.msnbc.msn.com/id/23069081/from/ET

Foundation featured in West Virginia Wesleyan College's Alumni Newsletter
November, 2007

West Virginia Wesleyan College recently featured
an article about the Menkes Foundation in the
school's Alumni newsletter. As Alumni of WVWC Drew & Jamie Eckman, the founders of the Menkes Foundation, recently shared their story with the college.

Drew & Jamie named their son Wesley Quinn Eckman after the school, which is the place where they originally met.

The newsletter reaches thousands of WVWC Alumni and will raise awareness of this terrible disease. To read the article click here.



Menkes Public Service Radio Announcement
November, 2007

Supporters of The Menkes Foundation have developed a Public Service Announcement (PSA) to run twice a day of five radio stations in Jacksonville, FL. In the future we hope to have this PSA run on radio stations throughout the country. Use the audio controls on the left to hear the PSA.



Menkes Awareness Day
November 30th, 2007

Supporters of The Menkes Foundation held "A Night of Remembrance" at various locations on the evening of November 30th, the last day of Menkes month. This activity consisted of a dinner, a candle lighting, and a prayer in memory of every child who has suffered or continues to suffer from this disease. Click here to see how our supporters choose to celebrate the evening

We encourage you to send us a photograph of your gathering if you would like us to post it here on the news section of our website.

Menkes Ad in the Official Journal of the American Academy of Pediatrics
October 1st, 2007

The Menkes Foundation is launching its advertising campaign with a full color / full page advertisement in the October issue of the Official Journal of the American Academy of Pediatrics! The journal has a circulation of over 66,000 readers, comprised mostly of physicians working in the field of Pediatric medicine. Of these physicans 84% of them see at least 50 patients per week and 41% of the physicians see over 100 patients per week.

Click the picture of the ad on the left to see it full size.

Menkes Awareness Cook-out
September 30th, 2007
St. Louis, Missouri

Supporters of the Foundation gathered for a Menkes Awareness Cook-out in St. Louis, MO. What started out as a small function for people to enjoy a meal and learn about Menkes became a huge success. The event raised $2190.63 to be used towards our Menkes Awareness campaign. The local Fire Department even made an appearence, peaking interest of those who passed by. Menkes brochures, a Menkes display and a local Pediatrician helped educate those who attended.

The event was planned by Jackie and John, the proud parents of James who is featured on our "Menkes Friends" page. For pictures of the event click here.

Tax Exempt Status Approved
September 26th, 2007

The Menkes Foundation has been granted exemption from federal income tax under section 501(c)(3) of IRS tax law. The Menkes Foundation is covered under section 501(c)(3) as non-profit organization. This is great news as it allows us to use 100% of your donations towards awareness of Menkes Disease.



Pampered Chef Fundraiser
September, 2007

Thank you to everyone who supported The Menkes Foundation by placing an order with The Pampered chef. The event generated over $200 in funds which will be used to advocate awareness as The Pampered chef donated 15% of the proceeds to the foundation.



1st Annual Colin Hayes Softball Tournament
August 18th, 2007
Hyde Park, Massachusetts

The 1st Annual Colin Hayes Softball Tournament raised $11,242 towards our awareness campaign. Danielle, the mother of Colin Hayes, planned the event which featured 10 softball teams participating for prizes in a double elimination tournament. The participants also enjoyed dancing, playing horseshoes and a dinner during the awards ceremony.

Of course the guests of honor were Colin Hayes and his mommy Danielle! Click here to see pictures from the 1st Annual Colin Hayes Softball Tournament.





The Menkes Foundation Gala
May 26th, 2007
Lexington Park, Maryland

The Menkes Foundation hosted its first fundraiser event, a dinner and dance on May 26, 2007. There were 148 guests in attendance who raised $10,000 for our Menkes awareness campaign. The awareness campaign consists of placing Menkes informational advertisements in medical journals, attending medical conferences, and producing thousands of brochures and specialty items such as pens and T-shirts to get the word out about the disease and our website.

The evening kicked off with cocktail hour where guests were encouraged to bid on 6 silent auction items.
Following cocktail hour was a four course meal and a informational speech given by Dr. Clesson Turner on Menkes disease. A slide presentation of our son Wesley Quinn Eckman was shown with a surprise video clip of him when he was 4 months of age. We ended the evening with a dance in honor of those who have passed on from Menkes as well as those who are fighting the disease daily. If you would like to see pictures from the event, click here.

Each dinner table featured a baby blue hydrangea floral arrangement (pictured above). To each we attached a tag bearing the name of a beloved boy to be honored and/or remembered. The guest with a birthday closest to that on the tag was encouraged to take the arrangement home to always remember those affected with Menkes. The guests were touched beyond words to accept this small token of our appreciation for supporting the works of the foundation.



The Menkes Foundation at the 12th Annual Run For Hospice
April 21st, 2007
Leonardtown, Maryland

Supporters of The Menkes Foundation took part in the 12th Annual Run For Hospice (5K & 10K runs) to promote the foundation and to raise awarness about Menkes disease.

Each member of our team wore a T-Shirt with the Menkes Foundation logo on it and a picture of Wesley. We were able to speak with those curious about the foundation and give them some information about Menkes disease.

For more information about the Run For Hospice visit: www.runforhospice.org




Wesley's World
April 4th, 2007

The Southern Maryland newspaper "The Enterprise" recently featured an article about Wesley Quinn Eckman. Wesley was a beautiful little boy who lost his battle with Menkes, inspiring his parents, Drew & Jamie Eckman to start the Menkes Foundation.
This article will help spread awareness & information about Menkes disease.
Click here to read the article.