End NF with Ian Desmond

Jul 9, 2018, Posted in Awareness, Community

Going to a Colorado Rockies baseball game?

Whether you are planning to attend a Rockies game at home (at Coors Field in Denver) or on the road, you may be able to meet NF Champion Ian Desmond to express your gratitude for his support through awareness to the NF cause and personal donations for research to Children's Tumor Foundation!

Littlest Tumor Foundation NF Family Wellness Retreat 2018

Jun 25, 2018, Posted in Community, Outside Opportunities

Every August the Littlest Tumor Foundation hosts the NF Family Wellness Retreat in Clintonville, WI. This year, the retreat will take place from August 10-13 at the Imago Dei Village and is free of charge. The mission at the retreat is to strengthen the family unit, build compassion, and address NF manifestations through practicing a healthy lifestyle.

Reflections on NF Forum from First-Time Participants

Jun 15, 2018, Posted in Community, Latest News, NF Forum, NF2, Schwannomatosis

In May 2018, the NF community gathered in Atlanta, GA for a long weekend of patient engagement training, leadership training, research updates, and patient and family support.  We asked two first-time attendees to reflect on their experience.

Letter from NFE athlete John Sullivan

Jun 1, 2018, Posted in Community, NF Endurance, NF Hero

On April 5, we lost one of our long time NF Endurance alumni athletes. John James Sullivan Jr. was 43 years old. Beginning with the Long Beach Marathon in 2005, he was a huge supporter of the Children's Tumor Foundation and the NF Endurance team.

John’s brother, Joe, shared with us some more about his brother, and the letter from John detailing the legacy he hoped to leave:

Proclamations 2018

May 31, 2018, Posted in Awareness, Community

THANK YOU to the cities and states that have proclaimed May as NF Awareness Month or May 17 as World NF Awareness Day.

Next Page