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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!
Story on Lizzie Tenney
$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 Click Here .
El Dorado Child with XP
Medicaid Coverage Understanding Supplemental Security Income Click Here to for info.
3M's Window Films Help Families with XP
XP Paper by Ashley Day
Sunkissed The Film Read about this movie involving XP. Click here
Logan's Story Read about Logan and her experience dealing with XP. Click Here
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.
Camp Discovery 2012
$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 visit https://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
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
Hatian Orphan Rare Disease 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.
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
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
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.
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.
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
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
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
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.
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When 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….. 
1st place - Robert "Andy" Scully from St. Joseph, MO 