Kenowa Courier – 5/7/19

Today we welcomed Jane Eppard, Executive Director of the Family Hope Foundation, who introduced Holly Gritter and her 5-year-old daughter, Lyla. Lyla was diagnosed within months of her birth with Spinal Muscular Atrophy, a genetic disorder much like ALS in adults. There was no treatment and no cure for SMA and the life expectancy of diagnosed infants was only 2 years. Fortunately, Lyla was accepted into a clinical drug trial in Dallas where she has made 17 trips in 4 years for quarterly spinal injections. These injections have literally been a lifesaver and, fortunately, the pharmaceutical company sponsoring the drug trial has provided the medication free (current drug cost is $750,000/year) and covered the family’s travel to Texas in full. It has now received FDA approval providing new hope to families impacted by SMA. 

Lyla, who uses a power wheelchair, has been gaining strength and, this fall, looks forward to going to kindergarten (with a nurse) in Hudsonville. She also goes to PT at Mary Free Bed 2x per week and, via Kenowa Ambuc support to the FHF’s Gift of Hope program, she participates in an equine therapy program in Caledonia that she loves (favorite horse = Apache) that has further helped with her head/core strength. Holly thanked us for the very real difference our group has made for Lyla’s health and quality of life via our support of the equine therapy scholarship. It was great to see this beautiful example of the impact the Kenowa Ambucs are making in the Hudsonville/Georgetown/Grandville area. 

It’s A Race To The Parade 

The calendar is ticking down to Memorial Day, May 27. Kelli Williams advised us that we currently have 284 runners signed up including 176 from Jenison Public Schools and over 80 from Jenison Christian. Parade entries are currently at about 30. 

We need all the help we can get at this club-sponsored community event and fundraiser – race registration, run route assistance, parade setup, drivers, walkers, candy distribution. Most in the room today volunteered to help at either the race, parade or both. We also have the assistance of volunteers from the Jenison Lacrosse program. If you were not there today, we also need YOU. Please contact Kelli at kwilliams@financeofamerica.com to volunteer. If you can’t find a few hours to spare on Memorial Day morning, come to the club meeting on May 27 and help us stuff 450 runner swag bags. Participation from all members of Team Kenowa will insure our success. Thank you for your help. 

Chapter Board News 

The Kenowa Ambuc Board met on April 23. A contribution of $1200 ($40/member) to National Ambucs Scholar’s Giving used to fund therapy scholarships was approved. The Treasurer reported healthy fund balances in both the club’s checking and savings accounts. The board continues to seek giving opportunities in line with our mission. 

FOREwarning 

The annual Kenowa Ambucs Adaptive Golf Clinic will be Tuesday, June 11 from 10a to 1p at the Pines Golf Course on Byron Center Avenue in Wyoming. Our golfing guests will practice on the range and green and then play a couple of holes prior to a free pizza lunch. Members are needed to host the event, assist our golfers and eat some pizza. This is a big event for these folks so please put this on your calendar and turn out for a good time with good people. 

Chapter Miscellaneous 

Denim & Diamonds Committee: The 2019 event will be held on Friday, October 11 from 6-11p at the Pinnacle Center in Hudsonville. Contact Beth at 446-7026 or sarahbeth3900@gmail.com for more details, to sign up as an event sponsor or to donate silent auction items. 

Chapter Board: The next Board meeting is noon on Tuesday, May 28 in the conference room at Grandville City Hall, 3195 Wilson Ave SW. All are welcome. 

Medical Equipment Loans: Refer any medical equipment loan contacts to the Family Network of Wyoming, 1029 44th Street SW, Wyoming (616) 885-9919 www.familynow.us 

Big Hat Days: The first club meeting of September, December, March and June are Big Hat Days (BHD). Big Hatters, please wear your Stetsons to the club meeting on those dates. Next BHD is June 4. 

Fun Fact (Lyla Edition): According to ABCmouse.com, the word “kindergarten” is a German word meaning ‘children’s garden’. Friedrich Froebel (an early proponent of childhood education) created an institute for play and activity to care for children and nourish their growth. 

Quote of the Day: “The notion of children being “kindergarten ready” is a bizarre oxymoron. It’s 

like saying you have to know how to play the piano before you can learn to play the piano.” 

– Peter Campbell 

Calendar 

May 21: Chapter Meeting (Noon @ Sunnybrook). Runner Bag Assembly. 

May 27: MEMORIAL DAY 5K RACE & PARADE (Georgetown) 

May 28: Chapter Board Meeting. Noon @ Grandville City Hall (Lunch = D. Martinson) 

June 4: Chapter Meeting (Noon @ Sunnybrook + BHD). 

June 11: Kenowa Ambuc Junior Golf Challenge (10a-1p at the Pines Golf Course) 

June 18: Chapter Meeting (Noon @ Sunnybrook).

Leave a Reply

Your email address will not be published. Required fields are marked *

*