World Cancer Day

World Cancer Day 2010, led by UICC (International Union Against Cancer), its members and with the support of the World Health Organization (WHO), will raise awareness of cancer prevention.

Each year, over 12 million people receive a cancer diagnosis and 7.6 million die of the disease.

The good news is that approximately 40% of cancers are potentially preventable.

Today, UICC launched the campaign "Cancer can be prevented too", focusing on how the risk of developing cancer can significantly be reduced through simple measures:

• Stop tobacco use and avoid exposure to second-hand smoke
• Limit alcohol consumption
• Avoid excessive sun exposure
• Maintain a healthy weight, through eating healthily and exercising regularly
• Protect against cancer-causing infections

According to Love Hope Strength, cancer causes more deaths worldwide than AIDS, tuberculosis and malaria combined.

Many cancer survivors come to the National Ability Center in Park City, Utah each year to participate in our programs. Recently, we welcomed back a group with the University of Texas' M.D. Anderson Cancer Center. This group of young cancer survivors had all had some kind of cancer that resulted in a physical disability. Being a teenager is hard enough! Being a teenager who has had to fight cancer and then have your physical abilities changed by it face an even tougher road. Through our programs, these teens can find confidence by getting out with their peers and accomplishing things they never would have dreamed. Check out their video and the slideshow of their 2010 visit at the bottom of this post.

This week we have welcomed a local group called Un-Limb-ited. These local teens have also battled cancer and other illnesses that have taken away limbs, but not hope nor life! We'll post some of their photos and videos soon.

In two weeks we will welcome back another great group of youth battling cancer. One Step at a Time is based in Chicago and brings teens from around the Midwest to Park City each year for a chance to escape some misguided peer pressure and build new friendships. New friends and new hobbies, like adaptive skiing and snowboarding, can help teens to put their energy toward positive things. There is no room for pessimism on the Greatest Snow on Earth!

If you know someone who has a physical disability because of cancer, please let them know that they, too, are welcome at the National Ability Center in Park City, Utah. Here, we help people everyday to discover their abilities.

2010 MD Anderson Ski Trip Slide Show from National Ability Center on Vimeo.

MD Anderson's 2010 trip to ski at Park City Mountain Resort with the National Ability Center.

A Rewarding Thank You

One of the most rewarding parts about being involved with the National Ability Center is watching families enjoy recreation together. Recently a family joined us for the fourth consecutive year on the ski slopes. After they returned home, they wrote us this great letter about the experience they had in our adaptive ski program.

Dear Mr. Schoon,

Please find enclosed a check to support the wonderful services the National Ability Center supplies to a population often forgotten. As a family, we have had the great fortune and pleasure to take part in many of the activities offered throughout the year.

I would like to draw your attention to a particular group of people who have made a major impact on our lives and the lives of our children. The winter ski school and its instructors and organizers have made the winters our favorite time of year! Jen C. is always ready to help and is, by far, the most organized person I have ever had the pleasure with which to deal. Kristen and Tracy are fabulous and are always ready to help or simply offer a smiling face first thing in the morning. Our prince in shining armor is Phil B. He has worked with our son for four winters in a row and we are pleased to say that he has now achieved his goal and skied a black diamond. In addition to teaching our son to ski, Phil has taught him so much more. He is the type of role model you hope to find for your son. He is patient, careful, and most importantly, VERY COOL. Our son looks forward to seeing him each time we come to Park City. And so do we.

We hope this contribution makes things just a bit easier for you and your amazing staff to continue the incredible work you do each day.


Fondly,

Debi and Harry

Thank you for the kind words and the generous donation! We look forward to seeing you on the Greatest Snow on Earth again very soon.

If you have an experience you would like to share with us, we'd love to hear from you! You can email us at info (at) DiscoverNAC.org, or you can send us a letter to PO Box 682799, Park City, Utah, 84068.

Utah Department of Health Survey

We received the following email from Gina Pola-Money on behalf of the Utah Department of Health. With many potential programs on the chopping block while the state legislature is in session, the information families provide is extremely valuable. The less information you give, the less likely a legislator is to make a good decision. While the NAC has not taken a position on any bill presented at this year's legislature, we feel it is important to pass along any information that may help the individuals, families and communities we serve.

January 25, 2010
Dear Families, Professionals, Friends and Advocates of Children and Youth with Special Health
Care Needs and Disabilities:

The Utah Department of Health would like your help in assessing the needs of Utah children and young adults with special health care needs and their families. Because families are the experts on what is and what is not working for them in the state and local communities, we are asking families to complete our online survey to help us gather information. You can go directly to the survey by typing http://bit.ly/4TAuFD in your web browser or you may link to the survey from our web-site at health.utah.gov/cshcn.

For this survey, a child or youth is considered as having a "special health care need" if he or she is under 22 years of age and has a physical, developmental, behavioral or an emotional condition requiring health and related services beyond those that are required by children generally. The survey should take approximately 10 minutes to complete and your answers are anonymous. If a family has more than one child with special health care needs, please feel free to fill out one survey per child.

Please forward this survey to as many families as possible! We want all voices of
families to count! This survey will close on February 12, 2010.

Thank you in advance for sharing your valuable time and expertise. The information we gather from the survey will help us better assess the needs of children and youth with special health care needs in Utah. Please feel free to contact us with any questions or concerns you may have at 801-584-8236 or through email at gpolamoney@utah.gov.

Sincerely,
Gina Pola-Money, CSHCN Family
Advocate & Family Voices
Harper Randall, M.D.
MCH Medical Director
Holly Williams, MSN
CSHCN Bureau Director

Legislative Hearing Wednesday

We received the following email from Joyce Dolcourt with Utah's Legislative Coalition for People with Disabilities. While the NAC has not taken a position on any bill presented at this year's legislature, we feel it is important to pass along any information that may help the individuals, families and communities we serve.

If you are concerned about budget cuts, now is the time to have your voice heard. Public testimony on the budgets for the Department of Health (Medicaid, Children with Special Health Care Needs) and the Department of Human Services (DSPD, Mental Health, and Aging) will be taken on Wednesday, February 3^rd in room 30 of the House Building on the Capitol Complex. The hearing will start at 2:00 pm. Public testimony will be preceded by formal presentations that will last about an hour. Since many members of the public will want to speak, it is best to have one person carry the message if you are going to be addressing the same issue. The time limit will be short and strictly enforced (2 minutes maximum and may be cut to 45 seconds if there is a large crowd). Sign-up to testify by calling (801) 326-1671 to get your name on the list of speakers. Sign-up will also be available at the hearing.

You may also want to bring 13 copies of your testimony to distribute to members of the committee. All materials should be three-hole punched.

Joyce Dolcourt, M.A.

Vice-Chair

Legislative Coalition for People with Disabilities

(801) 718-3013