Guide to Getting Media Coverage

Guide to Getting Media Coverage
Click the link above to access a guide for getting media coverage of your issue or event, including advice on writing press releases, letters to the editor, producing broadcast public service announcements, requesting proclamations, etc.

Press Release Information Form
CCNNPDF families may complete this form with information about their upcoming event and return it to the NNPDF for assistance in writing a press release, etc.

CCNNPDF Upcoming Events Web Page
The CCNNPDF is happy to post upcoming NPD awareness and fundraising events to the Upcoming Events page. Send event details, photos, a completed Photo Release Form , flyers (PDF), etc. to the NNPDF Central Office with a request that it be posted.

Order Form for Brochures, Newsletters, Posters, etc .

Niemann-Pick Disease -- Families in the News

Check out these links for stories about families affected by Niemann-Pick Disease. You may find inspiration and ideas for ways to increase awareness of NPD in your community. Contact the NNPDF for assistance in writing a press release for your local media.

Milledgeville Family Struggles with Rare and Fatal Disease (Feb 2012) The family of little Riley Robbins faces his Niemann-Pick Disease Type A illness together. Read the story and see the video by WMGT Channel 41 NBC reporter Ashley Minelli.

Over $20,000 Raised at 'Project Caden' Benefit (Jan 2012) Residents of Palestine, Texas, came together for a barbecue, auction and bake sale fundraiser in honor of six-year-old Caden Bailey (NPC). This article was posted by the Palestine Herald-Press.

What You See and What You Don't: Diagnosing Niemann Pick, Type C (Dec 2011) Jill Flinton, mother of Daniel Jonathon Flinton, wrote this story about her family's journey through Niemann-Pick Disease Type C for Complex Child e-Magazine. Four-year-old Daniel passed away in November 11, 2011, from the effects of NPC.

Bouchard Family Featured in FAA Newsletter (Oct 2011) Kristen and Justin Bouchard, parents of twins Cathryn and Corynne Bouchard, were featured in a newsletter for employees of the FAA, where both work. The Bouchards lost their twins to Niemann-Pick Disease Type C (NPC) before they were even two years old.

Niemann-Pick type C disease - Ty's story - told by Karen and Ty Quandt (Oct 2011) Karen Quandt, RN, MSN, and the NNPDF Board Chair, and son Ty (NPC) made a presentation at the Center for Rare and Neglected Diseases and the University of Notre Dame.

Survivor Tales: Niemann-Pick Type C (Aug 2011) Filmed at the University of Notre Dame, SurvivorTales: Niemann-Pick Type C tells the story of two children suffering from NPC and research into potential treatments. It features the family of Trent and Julie Smith, along with Dr. Kasturi Haldar and Cindy Parseghian. This show won a Telly Award in 2011.

Rare disease robs children of life (July 2, 2011)
The Fremantle Herald (Australia) published this article by Alan Peacock about Cassie Stallard (NPC) and her struggle with Niemann-Pick Disease Type C. Cassie passed away in September 2010 at the age of 21.

Boy's courage, fight show in Arctic journey (June 2011)
Jonathan Sher posted this article in the London (Canada) Free Press about Kareem Ghadban (NPB) and his planned trip to the Arctic.

Newzjunky Article about Kathy Lane, Board Member, and Upcoming Wine Tasting Fundraiser (Feb 2011)
Newzjunky.com posted an article by Timothy W. Scee II about the fundraising and awareness activities of Kathy Lane, grandmother to Collin and Cohen Parody (NPB), and NNPDF Board Member. An upcoming wine tasting event is highlighted.

The Quest for a Cure (Jan 2011)
The Hadley family's fight against NPC is featured in this article in the December 30, 2010 issue of Columbia , the national magazine of the Catholic Knights of Columbus group. Article by Joseph O'Brien, photos by Jared Cruce.

Damon's Story (10/10)

This video, titled "Damon's Story," raises awareness of Niemann-Pick Disease Type A (also known as Acid Sphingomyelinase Deficiency, or ASMD), which took the life of little Damon Eli Cardinal, at the age of 16-months, in 2008.

Abilene Pecan Orchard Honors Last Wish of Dennis Eversdyk (NPC) (12/20/09)
The Reporter-News of Abilene, Texas, posted this story about the development of a pecan orchard at Disability Resources, Inc., in memory of Dennis Eversdyk, who passed away from Niemann-Pick Type C in 2000 at the age of 44. "Dennis wanted a pecan orchard to be added on the 150-acre DRI site, so residents would have a work project along with the enjoyment of cooling off under the shades of the trees — along with having pecans...Those who knew Dennis speak of his ability to never give up; those who have started the pecan orchard don’t plan to give up either." Read more...

"Strength of family endures despite nearly insurmountable odds," (10/6/09)
The Mike and Jennifer Stults family of Grain Valley, Missouri, was featured recently in their local newspaper, The Pointe . The story focuses on the Stults' sons' battle against Niemann-Pick Disease Type C. Brisan and Parker, ages 5 and 3, respectively, were diagnosed with NPC a little more than a year ago. Read more...

Rogers Family's Experience with Hospice Covered by Keloland TV News (10/13/09)
Sheila and James Rogers, parents of Tristian Norton Rogers, were interviewed recently as part of a television news story about hospice care. Keloland (South Dakota) TV's "Healing through Hospice" tells the story of the Rogers' son, Tristian Norton Rogers, who passed away September 21st, from Niemann-Pick Disease Type A, at the age of 17 months, and the family's experience at the Avera Dougherty Hospice House. More...

Dillon Papier Celebrates 7th Birthday with Baltimore Orioles (8/30/09)
Dillon Papier and a flock of family and friends attended the Baltimore Orioles game on Sunday, August 30, in celebration of Dillon's 7th birthday, and to raise funds in support of the NNPDF. Dillon's father, Mark Papier, was interviewed on tv at the event.

Jessica Leoni and Family Featured in CNN Coverage (8/5/09)
Potential budget cuts by the State of California may affect the availability of health care for 12-year-old Jessica Leoni (NPC). Jessica requires round-the-clock care, and the family depends on services which will likely be affected by the state's budget crisis and resultant budget cuts. More...

"Fourth Annual Dillon Papier Day in Bowie," Bowie Blade-News article Editorial (6/8/09)
The Mark and Darrile Papier family hosted "Dillon Papier Baseball Day" with their local hometown Bowie Baysox baseball team in honor and support of their son, Dillon (age 6 ~ NPC). The event raised funds for the fight against Niemann-Pick Disease, and marks the fourth year that the team has participated in the fundraiser.

The Wall Street Journal article Good Morning America segment KTVU (Oakland, CA) clip featuring the Hempel family 4/3/09
Identical twins Addi and Cassi Hempel (both NPC), and their parent's efforts on their behalf, were featured in several media in the spring of 2009.

CBS Evening News Segment 3/09
Mark and Darrile Papier and their son Dillon (NPC) were the subjects of a CBS News segment early in 2009.

Mariarosa Martino (NPB) was featured on a tv news segment in Calgary, Canada. (3/09)

[Dec 21, 2009]