Martin Luther King, Jr., Day, in the United States, holiday (third Monday in January) honouring the achievements of Martin Luther King, Jr. A Baptist minister who advocated the use of nonviolent means to end racial segregation, he first came to national prominence during a bus boycott by African Americans in Montgomery, Alabama, in 1955. He founded the Southern Christian Leadership Conference in 1957 and led the 1963 March on Washington. The most influential of African American civil rights leaders during the 1960s, he was instrumental in the passage of the Civil Rights Act of 1964, which outlawed discrimination in public accommodations, facilities, and employment, and the Voting Rights Act of 1965. King was awarded the Nobel Prize for Peace in 1964. He was assassinated on April 4, 1968.
Legislation signed in 1983 marked the birthday of the Rev. Dr. Martin Luther King, Jr. as a federal holiday. In 1994, Congress designated the Martin Luther King Jr. Federal Holiday as a national day of service and charged the Corporation for National and Community Service (CNCS), the federal agency that leads service and volunteering, with leading this effort. Each year, on the third Monday in January, the MLK Day of Service is observed as a “day on, not a day off.” MLK Day of Service is intended to empower individuals, strengthen communities, bridge barriers, create solutions to social problems, and move us closer to Dr. King’s vision of a “Beloved Community.”
• All children can learn
• All children can attend age appropriate educational classes in local schools
• All children can receive appropriate education
• All children receive a curriculum/extra curricular activities that meet needs
• All children benefit from collaboration
Inclusion is the educational practice of educating children with disabilities in classrooms with children without disabilities.
Set the bar high, it’s ok to fail and not reach the bar, but it’s not ok to set the bar low and reach it and give up
NIH Study on Environmental Determinants of Holoprosencephaly
We understand only a fraction of the causes of holoprosencephaly and what
leads to the wide spectrum of clinical features seen in patients with
holoprosencephaly. In this environmental study, we are trying to better
understand the different factors that can contribute to holoprosencephaly and
its presentation that often varies from patient to patient.
What does the study entail?
Filling out out a 45-minute online survey
What does the survey ask about?
The survey asks about your pregnancy and the three months before
pregnancy. Please go to http://hope.ctss.nih.gov to get more information.
We are actively recruiting to reach our study goal of 200 participants!
If you are interested in filling out the survey:
*There is no compensation for this study
Want to join us in supporting a good cause? This #GivingTuesday We are raising money for Families for HoPE, Inc. and your contribution will make an impact,
Click on this link to donate:
Families for HoPE annual Halloween costume contest has begun!
Get in your entries!
1st prize $150
2nd prize $100
3rd prize $50
As we approach the 2018 Family Conference on Holoprosencephaly, we want to share with you how we will honor and remember those we love who have passed away with HPE.
As you may know, at each of our past family conferences on HPE, we have had a memorial balloon release. The balloon releases are lovely and special for all of those involved, but we also want to be mindful of our environment and the harm that releasing hundreds of balloons can cause to wildlife.
Instead of a balloon release, all in attendance will blow bubbles into the air in memory and celebration of the children who are no longer physically with us. This is why our new logo is shaped like a bubble. Do you see it?
In addition to blowing bubbles, it is our desire is to conduct a memorial ceremony at the conferences where we can read the names of our children in tribute to the impact they have had on all our hearts. We have heard of an old Jewish proverb that says a person dies two deaths. The first is the physical death; the second is when that person’s name ceases to be used. We don’t want that to happen with our loved ones, so our conference agenda will include “Memorial Ceremony and Reading of the Names”.
It is also our desire to create a physical memorial that is tangible and lasting, so we commissioned a special board from which will hang the names of each individual who has passed away with HPE. This memorial board will be on display at our conferences and will be incorporated into our memorial ceremony. When the conference is not in session, the board with its names will be on display in the Families for HoPE corporate office and names will be added when necessary. (Although we sincerely desire that there would never be a reason to add additional names to the board.)
We want to ensure that no names have been overlooked, so please view the photos (grouped according to the first letter of the child’s first name) and let us know if your child’s name should be added to the memorial. You may submit his/her name using our online form or by sending an email message to Roxanne.Steele@FamiliesforHoPE.org.
Thank you for your support of this special project.
With our recent logo change, we have revamped some of our written materials. This week, we prepared a mailing to over 800 HPE families in the U.S. and internationally. If you have or had a child with HPE, and you do not receive an envelope in the mail from us within the next week, it is likely that we don’t have your current mailing address.
You may send your contact information to our Secretary, Roxanne Steele at Roxanne.Steele@FamiliesforHoPE.org or you can send your child’s and family’s information to us through our online registration form.
If you have any questions, please contact Leslie Harley at Leslie.Harley@FamiliesforHoPE.org.
The Family Conference on Holoprosencephaly is the only conference in existence focusing on the topic of HPE, and this conference continues to be a model among rare disorders in that it brings 100+ affected families together with leading research scientists and clinicians. Attendees representing multiple countries come together to focus on daily living skills, medical needs and scientific research progress. Your sponsorship of this remarkable event will have a lasting impact on bringing hope to the lives of the children and families who attend this conference.
For these families, this event is more than just a conference. It is the pinnacle in their journeys of HoPE; it is their symbolic Mount Everest. The medical community at large receives minimal clinical education about HPE, so parents become the “experts” in HPE. This conference further empowers them with increased knowledge and understanding of the science behind the diagnosis; yet, also addresses the hope that exists beyond the heartbreak.
We are seeking sponsors for the 2018 Family Conference on HPE. To request a copy of our sponsorship proposal, please contact me at Josh@FamiliesforHoPE.org or Leslie Harley at Leslie@FamiliesforHoPE.org.
President of the Board of Directors
Families for HoPE, Inc.
Families for HoPE was formed in 2006 as an all-volunteer organization to serve the needs of children with HPE and their families. Twelve years ago, we had 2-3 new HPE families contacting us each month on average. Today, we can average 2-3 new families per day. The popularity of social media has had a huge impact on the number of requests for our services, and as a result, we have recently undertaken a strategic look at where we are today and where we want to be in the future.
In 2017, we engaged a consultant who has provided recommendations and guidance to increase our organizational effectiveness. Over the coming weeks and months, we will be implementing changes that will enable our organization to grow and flourish. This will allow us to invite more of our HPE families to become volunteers and reach more families needing our services.
This week, we have shared our new corporate logo, and you will soon see updates and new information on our website, fun opportunities for raising awareness and funds, opportunities to volunteer, and more!
We are very excited to begin this work, and we seek your patience as we work through these positive growing pains.