What's New at NAAF and Beyond

 "It's Cool to be Bald" story on NBC Chicago

6 year old Maria Mahnken is raising alopecia areata awareness with her sense of humor and gift of eloquence.  NBC Chicago recently ran a story about Maria and her efforts.  Her mother, Elene Cafasso Mahnken, emailed NAAF with the link to the video and her note, "I'm not sure if the reporter, Kim Vatis, passed this along to you.  We were THRILLED to get great coverage on the 5 & 10 p.m. news on /17/09 and another spot on the early news 9/18/09.  I hope this helps raise awareness about this mysterious condition!" NAAF is thrilled to have such a caring and pro-active 6 year-old (!) spreading the word about alopecia areata. Thank you, Maria and Elene! Watch the Video.  

Health Care Reform Legislation Webinar

As the health care reform debate has intensified in recent months, conflicting information about the various bills before Congress has been presented in the national media. In addition, information has been changing at a very rapid pace. At times, it has become difficult to determine what is true and current.
The National Health Council (NHC) will be hosting a webinar on October 13 at 3:00 p.m. EST to dispel common misconceptions and offer an up-to-the-minute explanation of how proposed health reform legislation will affect people with chronic conditions and their family caregivers.  The NHC will also detail its efforts to ensure that patients remain a top priority of decision makers during the health reform debate. 
If you are interested in learning more about health reform and its potential effect on people with chronic conditions, please register at http://www.puttingpatientsfirst.net/webinar. The registration form will also allow you to ask one question that you would like answered during the webinar. 
The deadline for registering for this event is Monday, October 5. 

 Support Maximum Funding for NIH in FY 2010
 Contact Congress Now

Speak out now to secure the highest funding level possible for the National Institutes of Health in FY 2010. Congress is working to finalize appropriations as the beginning of fiscal year approaches.

The House of Representatives approved $31.3 billion for NIH, a 3.1% increase, while the Senate Appropriations Committee has recommended $30.8 billion. Make your voice heard as Congress negotiates the final appropriations, and urge your delegation to support the higher House-passed level for NIH.

Americans support more funding for research as seen in our newest advocacy tool, America Speaks; Poll Data Summary, Volume 10. Use this wealth of public opinion data to take action for FY 2010 funding now and to write letters to the editor, op-eds or articles, give speeches and advocate for research to improve health throughout the year. 

 September is Alopecia Areata Awareness Month!

 Do what you can to educate YOUR community

It’s that time again where we put our heads together and roll up our sleeves for a common cause. Since September is Alopecia Areata Awareness Month, no day is better than today to start making plans to participate. Awareness Month has been celebrated in every fashion under the sun; there is no event too big and no idea too simple for Alopecia Areata Awareness Month.

The theme for this year’s Awareness Month is Starting Early: Educating Today’s Youth about Alopecia Areata, though you can get involved in any way that suits you. Please read through the materials below and contact lisa@naaf.org with your awareness month ideas!

Awareness Month Press Release
Awareness Month Cover Letter
School Pack, Starting Early: Educating Today’s Youth about Alopecia Areata

Community Awareness Manual
Special Event Application

Help NAAF's 1st Auction for Awareness Succeed!

From September 21-30, 2009, NAAF will be holding the inaugural Auction for Awareness of Alopecia Areata. In honor of children, women and men with the autoimmune skin disease, this online auction, with the help of eBay and Missionfish, will raise funds to enhance programming in the areas of research, support and awareness. Please join us in celebrating awareness month by helping to make this auction a success. Auction items will be accepted up until September 1. The more auction items that are donated, the bigger impact the auction will have on the lives of individuals with alopecia areata. Read More>>>

NAAF Marketplace Book Wins Two National Book of the Year Awards 

"If Your Hair Falls Out, Keep Dancing!",  by LeslieAnn Butler, a book that one reviewer describes as “Sex and the City meets alopecia" and another as “Helpful, hopeful, funny and fabulous!” has been honored with the prestigious national Book of the Year Award by ForeWord Magazine. The book, which continues to sell all over the world, previously received another national first place award for the ReaderViews  Reviewers Choice Award for Best Body/Health Book of 2009.

Illustrated with twenty-three of LeslieAnn's paintings, "If Your Hair Falls Out, Keep Dancing!" is filled with tips on how to discuss alopecia areata with family and friends, available treatments, doctors, dating,  makeup, wigs, and perhaps most important, attitude.  Written with warmth and humor, this book helps women realize that they can enjoy and celebrate life with alopecia areata and go after their dreams knowing they're not alone. You can purchase the book at the NAAF Alopecia Areata Marketplace where 10% of your purchase dollars go towards NAAF. Visit the marketplace here.
 

Leading Patient Advocacy Organizations United on Health Care Reform

June 3 - Forty-eight leading national patient organizations (including NAAF) have called on President Obama and members of Congress to enact health care reform legislation that guarantees effective and affordable health and long-term care coverage for all Americans. In a statement issued June 3, 2009, the chief executives of the patient groups specifically urged that reform legislation cover everyone curb costs responsibly abolish exclusions for pre-existing conditions eliminate lifetime caps, and ensure long-term and end-of-life care. Read the full statement here. 

An advertisement containing the statement and listing the CEOs and their organizations appeared in the June 3 edition of Politico newspaper. The purpose is to demonstrate to elected officials and the public that we are united in our effort to bring about meaningful health care reform. You can view the advetisement here.

   Charlie’s Angels Program Shines in NBA Spotlight

Charlie Villanueva was recently featured as a part of NBA Cares ongoing video campaign aimed at showing the general public the positive influence athletes have on communities. Click here to get a glimpse of what Charlie does for NAAF through his commitment to children and families affected by alopecia areata.

  BBB Wise Giving Alliance Accreditation Granted to NAAF

We did it! It is exciting to convey that the major non-profit watchdog group in the country, the BBB Wise Giving Alliance, found that NAAF operates with the utmost integrity, transparency and accountability.  A BBB accredited charity is an organization that meets all 20 of the BBB Standards for Charity Accountability based on a review of information and materials provided by the organization. To read the full BBB Wise Giving Alliance report click on the BBB logo to the left.

NAAF is on Facebook!

There is a new way to stay connected to the NAAF community. If you are a Facebook member, look for the National Alopecia Areata Foundation group and page. And if you are not a member, join Facebook to join this group. This is THE spot to remain current with everything NAAF while keeping in contact with your alopecia areata family. Look for our tree logo to be sure you are at the correct place. If you have questions, contact lisa@naaf.org.

  Congress Recommends Increasing Research Funding in 2009 - Tell Your Elected Officials that Health and Science are Priorities

Congress is recommending spending bills for FY 2009 that include critical increases for research funding. Take action now and urge your elected officials to support research to improve health!

The House LHHS Appropriations Subcommittee is recommending increased budgets for the National Institutes of Health (NIH), the Centers for Disease Control and Prevention (CDC), the National Science Foundation (NSF) and the Agency for Healthcare Research and Quality (AHRQ) in FY 2009. The Senate Appropriations Committee is proposing similar increases for NIH, CDC and NSF, but  no increase for AHRQ.

Contact your Representative and Senators immediately and urge them to support increases in health research funding.

You can take action right now by visiting Research America's website where you can email a letter to your Representative with just a few keystrokes. Please act now.

 Shop the Alopecia Areata Marketplace This Year

 Please remember the NAAF Marketplace  when you shop online for your those hard to find  accessories, books and gifts. The companies listed on these pages have been tested by NAAF and are listed for their high quality products and trustworthy business practices. When you order your items, check the box marked 'NAAF or enter the word 'NAAF' on your final order so 10% of your purchase will be donated to benefit individuals affected by alopecia areata.

 Charlie Villanueva Wins 'Bald and The Beautiful' Sweepstakes

Thanks to all of your votes Charlie Villanueva won the Eagle Snacks and the American Eagle Foundation's 'Bald and The Beautiful' sweepstakes. Villanueva, starting
forward for the Milwaukee Bucks, went head to head with Tiki Barber, Terry Bradshaw, Chris Daughtry and won as the Nation's favorite. "I am honored to be named the fan favorite and I would like to thank all those who logged in to vote and show their support," says Villanueva.  Charlie will receive a beautiful trophy and an award of $1500.00 for the National Alopecia Areata Foundation.