Taste 2011 to Benefit Foundation for Nager and Miller Syndromes

This year the Morton Grove Foundation’s annual fundraiser, the Taste will be held on March 10, 2011 at The White Eagle in Niles, Illinois. Again, hundreds of local residents and businesses will donate their time and their money for this Morton Grove tradition. The Taste is famous for its great food, raffles, and auctions. While most people know that the proceeds from this all-volunteer event support local charities; many of the charities themselves, like the Foundation for Nager and Miller Syndromes (FNMS), are relatively unknown.

FNMS is a small charity that cares in a big way. Nager and Miller syndromes are rare genetic conditions which cause facial and limb disfiguration affecting the ability to see, hear, breathe, eat, walk, and talk. The founder of FNMS, Glenview resident Margaret Ieronimo-Hogan, had not heard of these syndromes until her second child, Bridget, was born with Miller syndrome twenty years ago. Margaret still recalls her despair in the delivery room as doctors and nurses rushed to save Bridget’s life. But the infant’s determined cry quickly unleashed Margaret’s maternal instincts, turning her panic to resolve and her fears to hope.

Bridget endured over twenty surgeries and was dependent on a tracheotomy and feeding tube. Margaret and her family gave Bridget an abundance of love and excellent medical care. But what Margaret needed most and could not find was emotional support and answers on how to help her child meet both the physical and emotional challenges of being different. She searched for others with the syndrome, which was not easy since Bridget was one of only twelve known cases of Miller syndrome in the world. She found a family in Utah, then one in New Zealand, then another in England. Together they started their own support group to exchange photos, stories, advice and encouragement. The Miller syndrome families joined up with families affected by Nager syndrome which has similar characteristics, and thus began the FNMS.

Caring parents are still the backbone of FNMS. Like the movie ‘Pay It Forward’, the all-volunteer group serves as an information clearinghouse for over 100 families and their professionals. FNMS recently assisted genetic researchers in locating the gene responsible for causing Miller syndrome. At the foundation’s international conference, families gather from around the world to share their experiences, strength and hope. These conferences have been described as “life altering” and “an emotional lifesaver”. With hope, love, hard work and perseverance, Bridget and FNMS have gone from surviving to thriving!

Donations from this year’s Taste will help FNMS provide travel scholarships to those who otherwise could not afford to attend the group’s international conferences. For more information about the Foundation for Nagar and Miller syndrome, visit www.fnms.net.

The Taste will also provide grants to 23 other worthwhile charities. For tickets and information for this year’s Taste, please call Jim and Yvette Karp at 847-967-0222.