Friday, March 6, 2015

                                    MEET CAMERON



I know I usually post a Blog for book reviews or Blog tours for a book but today I am going to post a blog about helping a little guy come to the United States to meet with World Renowned doctors in the hope of helping him become pain free and improving his quality of life.

 Meet Cameron or Cam for short.      Help for Cam


Cam is a sweet boy who has a very rare genetic condition PBD (Peroxisome Biogenesis Disorder)
I know about this disease because my own daughter had it. This very disease claimed my daughters life and has claimed the lives of many other children, sadly there is no cure at this point in time but treatments have come a long way and I hope that someday there will be a cure. This disease effects every cell in the body, just think about that with each and every cell in the body not functioning properly nothing in the body works the way it should. Nutrients that are needed are not not absorbed the way they should be, kidney's, liver, bones, blood, skin, ears, eyes, teeth, hair, lungs... everything and I mean everything is effected.

Rare diseases are not given a lot of press time because well they are rare and so often are overlooked, so funding for research and media time are things that just are not there, but today you can help one child come here to our country and meet with doctors, you can help one child live a life with less pain. If you can not donate please share and help spread the word not only about this disease but also in the hope of helping this sweet boy visit our country and perhaps find some relief from his pain.  Please read below for more information about what your donation will help cover.  Thank you.

You can help Cam

The GFPD Conference, which will take place from July 17-21, 2015, is the most important and influential annual gathering for families affected by Peroxisome Biogenesis Disorder – Zellweger Spectrum Disorder (PBD-ZSD) and the doctors and researchers who treat & study the disorder. The conference encourages the exchange of personal experiences and provides scientific updates about the progress of PBD-ZSD research work and available medical options.
This year’s conference will host internationally recognized physicians, scientists, and professionals including:
• Dr. Gerald Raymond from The University of Minnesota in Minneapolis, Minnesota
• Dr. Nancy Braverman from McGill University in Montreal, Quebec
• Dr. Bill Rizzo from The University of Nebraska Medical Center in Omaha, Nebraska
• Dr. Eric Rush from The University of Nebraska Medical Center in Omaha, Nebraska
• Dr. Joe Hacia from The University of Southern California in Los Angeles, California
• Ann Moser, B.A. from Johns Hopkins University in Baltimore, Maryland.
• Dr. Richard Rachubinski from The University of Alberta in Edmonton, Alberta
• Dr. Michael Wangler from Baylor College of Medicine in Houston, Texas
• Linda Alsop, Director of Deaf-Blind Programs, from Utah State University in Logan, Utah
• Jeffrey Simmons, M.A.,CCC-A, from the Lied Learning & Technology Center in Omaha, Nebraska
The goal of the 2015 conference is to introduce families to professionals who support individuals with PBD-ZSD in the areas of genetics, metabolic specialty, neurology, vision, hearing, physical and occupational therapy, education, grief support, and palliative care. Additionally, families will have ongoing opportunities to connect and support each other through group activities and sessions.
The GFPD is partnering with The United Leukodystrophy Foundation and International Peroxisome Scientists, as they, too, are hosting conferences at The Embassy Suites Downtown/Old Market concurrent with the GFPD Conference. We have planned activities with these groups to facilitate community building and support across the organizations.
Medical appointments are available at Children’s Hospital & Medical Center, which is a big draw to the conference for many participants. Clinic visits with Dr. William Rizzo (Metabolic Specialty), Dr. Eric Rush (Genetics/Bone Density/DEXA Scans), & Dr. Donny Suh (Ophthalmology/OCT Scans) give families access to gifted professionals who treat and study PBD-ZSD.
Please consider supporting the Anderson family in their journey to the GFPD Conference. As children with PBD-ZSD surprise many and surpass ages never thought possible upon diagnosis, it is important for families to have ongoing support - medically and emotionally - to care for their child transitioning to adulthood.
With hope,
Shannon Butalla, President
The Global Foundation for Peroxisomal Disorders

Please give, just click the link below. Thank you.

Help Cam

Or you can donate on one of these three wonderful women's pages they are doing a wonderful fundraiser for Cam Please read below:


 (Pulled from Tash's Facebook Page)
Three crazy crazy women and three of Cam's favorite people in the world are doing a 15000 foot sky dive on 23rd May to raise money to get him to Nebraska to see some world renowned doctors.
If you do want to sponsor Kate, or for anyone who has been having trouble donating on his causes page, you can donate on the link below. As soon as Kayleigh's and Alice's pages become available I'll share those too.
Thank you so much to everyone who has donated/tried to donate/shared links/ shown support by kind words and well wishes. I can't tell you what the support means... we're completely overwhelmed and touched by everyone's kindness! Thank you. xxxxxx

Let's get Cam to America!!   Skydiver Kates Go Fund Me Link

On the 23rd May I'm going to do a skydive from 15,000ft to raise money for the GFPD (global foundation for Peroxisomal Disorders) this is a charity which specializes in Cam's condition Peroxisomal Biogenesis Disorder, the family need to raise enough funds through the charity to get Cameron to America as this maybe his last chance that he will be able to travel due severe bone pain and hip problems, as my family and close friends that know me know that this is a real challenge for me but I really want to do this for Cam and his family,  Cam is such a wonderful and amazing young lad that me and my family are so fond of and his parent's are pretty amazing too!! I really want to raise as much money as I can to show them how much we want to get them to America, I would be truly grateful if you would sponsor me no matter how little, if the family don't raise enough money in time then all the proceeds will go to the GFPD charity to help benefit other families with children with Cam's condition,

Info from Tash ( Cam's mum)

HOW THIS WILL HELP
Cam's disorder is very rare. We will have the opportunity to see physicians and scientists who specialize in his rare disease called a Peroxisomal Biogenesis Disorder. Not only will we be supported by world renowned medical professionals at the conference, Cam will also be seen in a specialty clinic to help him with all the things that come with age and PBD at the Children's Hospital & Medical Center in Omaha, Nebraska.  I am hoping that we will be able to find a solution or a plan to help combat the severe pain that Cam suffers daily due to bone pain and hip subluxation; something we've struggled to get on top of here in the UK despite our doctors and specialists best efforts.
We will also have the opportunity to meet and network with other families faced with the same devastating disorder to provide support to us as a family.
There won't be another chance like this for another two years at least, and we don't know what state his bones/hips/joints will be like at that point so if we're going to do a long trip it needs to be this year really. It's a long shot, but if we don't raise the funds in time, anything we do raise will go straight to the GFPD, (Global Foundation for Peroxisomal Disorders) an amazing Charity who raise funds to help families with children with Cam's condition as well as funding much needed research on this rare disease.

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