The Dohlke Family Raises Money for NF Research

I’ve worked at the Louvre Salon in Fairview Heights for 18 years. Our salon supports many causes throughout the year, and every year, my Louvre family rallies around my family to help support NF. This year, we raised an amazing $1700 in support of the Washington University NF Center.

We met Dr. Gutmann when my son Garrett was diagnosed with NF1 in 2005. We were scared and overwhelmed. We knew nothing about Neurofibromatosis. Dr. Gutmann, and all of the staff of the Washington University NF Clinical Program at St. Louis Children’s Hospital, were so incredibly supportive. Every doctor, practitioner, and therapist have been so kind and supportive over the years, offering so many programs and answers to the myriad of questions we have had to this day. Garrett (and our whole family) have participated in the complementary care programs provided by the Washington University NF Center, including Club NF and Teen NF. Currently, Garrett volunteers whenever he can at the events offered by this amazing group of people.

When Garrett was about 7, Dr. Gutmann said to me (after I had a million confusing questions) “You are your child’s advocate, what is more important than that?” He went on to say “ Never settle for an answer you don’t understand, even from me”. That conversation changed my view of many things, not just for Garrett’s care, and made me dive forward with raising awareness about NF, and supporting these wonderful programs and staff in whatever way we could.

I can’t offer enough thanks to Dr. Stephanie Morris, Nurse Practitioner Anne Albers, and the countless therapists and support staff who have counseled me and my whole family, as well as treated Garrett for all of these years. We have been extremely blessed, and Garrett has been so fortunate to have minimal issues with his NF. We have met some really incredible families over the years, and we continue to support each other, whenever we can.

Every May and June, I ask my friends, family and all of our generous Louvre staff and clients, to dig in their pockets to support NF. We offer raffle baskets, pay for wearing jeans on weekend work days, and donate products, gift certificates and simply hand over their hard earned money for this great cause. The NF Center adds a few goodies every year to our baskets, too! I am so proud of my workplace and family. My husband Bill, always doing what we need, and my son Drew, who has been the most amazing and supportive big brother anyone could hope for! So, I proudly wear my button that says: Ask me about NF.

Peggy Dohlke

Nicole’s Nook: Summer 2019!

Summer time is here, and while it’s a welcome change of pace, many of our kiddos need structure, stimulation and challenge. Screen time is on the rise, making educational and enrichment opportunities more difficult to prioritize. Limits on screen time should be set, and when on devices, time should be spent on interactive, creative and educational apps vs. passively watching videos.

One summer activity that can have multiple benefits is to keep a journal. My Wonderful Days is an app that can house those journal entries in one place.  This is a great way to work on those reading, spelling, writing and typing skills. You can add photos to your entries and even share them with others. Summer is such a fun time, and often students are highly motivated to share and elaborate on their experiences with others.

Other fun and educational apps include:

  • Moose Math
  • Pet Bingo
  • Park Math HD
  • Splash Math
  • Khan Academy for Kids
  • Marble Math
  • Toca Hair Salon
  • Toca Kitchen
  • Book Creator
  • Puppet Pals
  • Shadow Puppet Edu
  • Sentence Maker
  • Letter Reflex
  • Dexteria Dots
  • Dexteria Jr.
  • Doodle Find
  • Little Things
  • RushHr
  • TinyCards
  • Bitsboard

So enjoy the summer, but don’t let those learning opportunities pass you by!!

Nicole Weckherlin, OTR/L
Occupational Therapist
Team NF