Boy Scout Bake Sale

Paxton Feltner (right) and Hunter Stubbs raised more than $100 selling baked goods and lemonade for their local Boy Scout troop. The money was donated to the XP Family Support Group. Way to go boys!

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Story on Lizzie Tenney

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$5 Million in grants

The U.S. Department of Education has awarded more than $5 million in grants to operate 19 special education Parent Training and Information (PTI) Centers in 13 states and Puerto Rico. PTI Centers help parents better understand their child’s disability, learn about appropriate early interventions and special education services, and provide the training and information they need to work with special education professionals. This information was recently added to Disability.gov. To learn moreClick Here .

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El Dorado Child with XP

Click for Story

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Medicaid Coverage

Understanding Supplemental Security Income Click Here to for info.

 

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3M’s Window Films Help Families with XP
Click Here

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XP Paper by Ashley Day 
Click Here

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Sunkissed The Film

Read about this movie involving XP. Click here

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Logan’s Story

Read about Logan and her experience dealing with XP. Click Here

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XP: Survey of Patient Experiences

The Henry Ford Hospital Department of Dermatology (Detroit, MI) is conducting a survey of Xeroderma Pigmentosum (XP) patients in an attempt to gain valuable information about XP, including how this condition affects patients and their families.

Click Here to Read More

 

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Camp Discovery 2012

Click Here for details.

 

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$5 Million in grants

The U.S. Department of Education has awarded more than $5 million in grants to operate 19 special education Parent Training and Information (PTI) Centers in 13 states and Puerto Rico. PTI Centers help parents better understand their child’s disability, learn about appropriate early interventions and special education services, and provide the training and information they need to work with special education professionals. This information was recently added to Disability.gov. To learn more visithttps://www.disability.gov/education/news_%26_events.

 

 

 

Harley Davidson Drawing Ticket

Winners

Thank you Bricker Family for raising over $10,000 for XP!

The winners are:

3rd J. Martinez Richmond Indiana
2nd R. Smith Spiceland Indiana
1st R. Rottener Roseland LA


Cameron, who has XP, is pictured with the TAG Team, holding their winning trophy.

Vandalia-Butler TAG Students bring home trophy from LEGO League challenge.

Six talented and gifted (TAG) fourth graders at Vandalia-Butler City Schools have proved to be adept at research, and they have a trophy to show for it.

Andrew Simones, Drake Midlam, Alyssa Burley, Clayton Longfellow, Sam Martin and Marissa Bass earned a trophy for research at the First Lego League challenge in December. The students competed as the Brainy Bot Builders.

For the competition, teams were tasked with two challenges.  The first focused on biomedical engineering.  Teams were required to research a real-life medical issue and develop an innovative solution.  For the second challenge, the teams needed to build and program an autonomous robot.

For their medical issue, The Brainy Bot Builders studied Xeroderma Pigmentosum, a skin condition that is characterized by photosensitivity, premature skin aging, and tumor development. According to Vandalia-Butler City Schools Tag teacher Tina Durnell-Smith, the judges were impressed with the team’s knowledge of the disease and the interest they took in finding an innovative solution.

“They also did very well in the robot competition as well as the team building session,” Durnell-Smith said. “I was very proud of my students as this was their first year and they were one of the youngest teams at the competition.

 

Medicaid Coverage

One of the biggest concerns people receiving Supplemental Security Income have about going to work is that they may lose their Medicaid coverage. If you are blind or disabled, regardless of age, and you have Medicaid before you go to work, your Medicaid will continue while you are working as long as you still have a disabling condition. For more information click here.

Aimee’s Dream Room

The adorable 8 year old girl was the recipient of the Sweet-Dreams Foundation work and dedication to design a dream bedroom for Aimee. Click Here to read article.

Job’s Story

The XP Family Support Group was contacted by Mission for Hope and immediately stepped in to help Job.  We provided a light meter, UV hood, and sunscreen.  We also had the Byrne family who are active members of XPFSG open there home as a temporary foster family until Job was placed with his permanent family, the Beach family.  We are so blessed to have been touched by job and look forward to a long relationship with Job and his new family.

Click Here to read article. Click Here to watch video.

Sunkissed The Film

On the Navajo Reservation in New Mexico, a mysterious genetic disorder called Xeroderma Pigmentosum has been claiming the lives of young children. When Dory and Yolanda Nez, a Navajo couple, learn that their children were born with XP – a disorder that makes exposure to sunlight fatal – they embark on a brave journey to discover why XP came into their family, and why it’s so prevalent on the reservation. Slowly, they uncover details about their own complex identities and discover a disturbing connection between XP and the most traumatic event in Navajo history.  Michele Milota has traveled to the Navajo Reservation and has met the families and continues to work with them.  Please support SunKissed and the efforts they are making to raise awareness on XP and the children on the Navajo Reservation. Click Here to visit site.

 

Hatian Orphan Rare Disease er

Video about Job… Click Here to Watch

 

 

Boy Survived Earthquake, Tormented by Sun

A Haitian orphan with a rare medical condition can now see the light, in safety.
Generous donors are installing ultraviolet film on the Kemah house that is now home to the boy, who suffers from a genetic abnormality called XP, which renders him vulnerable to UV light..
….. Read More

 

 

Sun-Gard

A four year old boy in Kansas requires essential protection from the sun and any ultraviolet (UV) exposure  due to an extraordinarily rare and incurable skin disease called Xeroderma Pigmentosum (XP). ….. Read More

 

 

Logan’s Story

dfWhen I was a little girl I used to love to play outside. I live in the Sunshine State so there is plenty of fun in the sun. I would spend days at the baseball field watching my Daddy. Sometimes I would just lounge around in my raft and watch the birds. Mommy and Daddy would take me to Sea World or Disney for the day. Life was spectacular! Then everything changed and my life turned to a world of darkness! I was so little! I didn’t understand! So here is my story….. Read More

 

 

Piaskowski Beach Wedding

Mike and Tiffany have chosen XP Family Support Group as their wedding gift of choice.  Tiffany’s mothers partner has Xeroderma Pigmentosum “XP” and XP Family Support Group is there charity of choice.  Please celebrate Mike and Tiffany wedding on August 14th  by making a donation to XP

To make a donation, click here.

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XP: Survey of Patient Experiences

The Henry Ford Hospital Department of Dermatology (Detroit, MI) is conducting a survey of Xeroderma Pigmentosum (XP) patients in an attempt to gain valuable information about XP, including how this condition affects patients and their families.
This online survey should take approximately 15-30 minutes to complete.  By completing this survey, you are assisting your doctors in understanding who is most likely to develop XP, and at what age those people are affected.  Results from this survey may help other people who suffer from XP in the future.

Participation in this survey is optional, free, and confidential.  Your participation does not require any treatment or risk to you or your child.

If you are interested in participating, please email your mailing address to hawki105@msu.edu.  We will mail you a consent form to be returned to our department.  You will then be given access to our online survey.

If you have any questions or concerns regarding this survey, or if you would like information regarding the study results, please call us at Henry Ford Hospital, Department of Dermatology. The telephone number is (313) 916-2171.

Thank you!  We greatly appreciate your participation in this project.

 

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Toast For Hope Fundraiser

Join us for the Toast For Hope event benefitting XP Family Support Group. Toast For Hope Sacramento is Friday September 17th at Carvalho Family Winery. Click Here for more information.

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XP Family Support Group and Job

The XP Family Support Group was contacted by Mission for Hope and immediately stepped in to help Job.  We provided a light meter, UV hood, and sunscreen.  We also had the Byrne family who are active members of XPFSG open there home as a temporary foster family until Job was placed with his permanent family, the Beach family.  We are so blessed to have been touched by job and look forward to a long relationship with Job and his new family. Click Here to watch the video.

 

 

Kansas Boy with Rare Disorder Celebrates Birthday at Sedgwick Co. Zoo

Peyton has a rare disease called Xeroderma Pigmentosum The Madden’s say they get a lot of help from a support group in California for families dealing .. Read More

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News 10 XP Story

Rare condition means life mostly in dark for two local girls. Click Here to read the News 10 story about Aimee and Greychen and the XP Family Support Group.

 

 

Harley Davidson Raffle

harley1st place – Robert “Andy” Scully from St. Joseph, MO

2nd place – Larry Broussard from St. Martinville, LA

3rd Place – Terry Steele from Brenham, TX

Robert “Andy” Scully from St. Joseph, MO sitting on his new
2010 FXDF Fat Bob Harley Davidson

 

Hidden From Light

We will be presenting the documentary “Hidden From Light” at the American Academy of Dermatology Annual Meeting in Miami Beach, Florida.  This is a tremendous opportunity for doctors working in the field to witness not only the challenges of children dealing with XP, but also the work of some very special colleagues.  Click Here for more information.

Congratulations and Thank You, DR. Jim Cleaver

The XP Family Support Group applauds Dr. Jim Cleaver on his recent induction as ‘Fellow of the American Association for Advancement of Science (AAAS)’. The AAAS is an international institution recognizing those individuals from whose “efforts on behalf of the advancement of science or its applications are scientifically or socially distinguished.” For nearly 5 decades, Dr. Cleaver’s concentrated studies in the area of DNA repair have influenced many areas of cancer research including melanoma, breast cancer and colon cancer. Dr. Cleaver is heralded as the scientist first responsible for identifying the XP gene in 1967.

In September 2009 he also received a prestigious research award from the Environmental Mutagen Society (EMS), heralding his work on the role of DNA repair and cancer prevention, recognizing XP specifically. The EMS is an international scientific society dedicated to furthering research on the environmental causes of genetic damage, cancer and neurological disease, and recognizes one scientist annually for their lifetime of research.

Dr. Cleaver is a long-time friend, expert and consultant to the XP Family Support Group and is currently conducting research on our behalf– “Questions of UV Dose-Risk versus Benefits”. His remarkable focus towards XP research continues to provide us a legitimate reason for hope.

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