The Arc of East Central Iowa E-News

It’s a wrap – summer that is, and what a great summer it was at The Arc! The two Summer Day Programs (Vinton and Cedar Rapids) were a big success. In spite of many hot days, the schedule was full of fun and offered many social, leisure, and exploratory opportunities and experiences. The two daycare sites (OASIS at Regis Middle School and BASICS at Christ Episcopal) were at full capacity from June through August. Now that school’s back in session, we will resume regular hours for our before and after school programs.

With fall in full swing, it’s time to look at some opportunities available at The Arc in the next few months. Look forward to events including focus and planning group sessions to help our senior staff understand what our families want and need; training for families regarding person-centered planning; a chance to meet electoral candidates for office; and the establishment of new support groups. On the lighter end, our staff is already working on a “Cabin Fever” night for families. We were thinking that mid-winter might be a good time to test this fun activity!

Finally, I have to share that I am sad, frustrated, and worried about our membership numbers. The Arc board and staff is intent on providing services and advocacy in order to better the lives of individuals affected by disability. This often requires educating and influencing policy makers. The Arc (locally and nationally) is not in a position to hire powerful lobbyists to tell our stories. It is up to us to speak up in a strong voice to make politicians understand our concerns and needs. So, PLEASE become a member. With just one new member and only 17 renewing members, July was one of our worst months for membership. We CAN do better. Please support our organization that in turn supports individuals and families with cognitive disabilities. Let’s all do our part to make it grow so by the year 2010 we have 2,010 members!

Delaine Petersen
Executive Director

Sanfilippo Syndrome

Sanfilippo Syndrome, or MPS (Mucopolysaccharidosis) III, is a rare genetic disorder that occurs in roughly 1 of every 70,000 births.

Children with Sanfilippo are born missing an enzyme that helps break up used mucopolysaccharides (long chains of sugar molecules) called hepran sulfate. These chains instead remain stored in cells inside the body, causing continual and progressive damage over time.

Symptoms usually become apparent between the ages of 2 and 6 years old and include regressing motor and communication skills, restlessness, joint pain, lack of balance, seizures, possible hearing loss and a shortened lifespan. There is no known cure.

E-Challenger The Arc of East Central Iowa's E-news \| Volume 1\| September 2006
Laps for Lucas! A 5k run / walk for the National MPS Society and Lucas Montgomery will be held on September 10, at 8:00 a.m. at Prairie High School in Cedar Rapids. (Registration begins at 7:00 a.m.) Registration forms are available online at www.lapsforlucas.com or (319) 329 - 4796.
From the Director's Desk It’s a wrap – summer that is, and what a great summer it was at The Arc! The two Summer Day Programs (Vinton and Cedar Rapids) were a big success. In spite of many hot days, the schedule was full of fun and offered many social, leisure, and exploratory opportunities and experiences. The two daycare sites (OASIS at Regis Middle School and BASICS at Christ Episcopal) were at full capacity from June through August. Now that school’s back in session, we will resume regular hours for our before and after school programs. With fall in full swing, it’s time to look at some opportunities available at The Arc in the next few months. Look forward to events including focus and planning group sessions to help our senior staff understand what our families want and need; training for families regarding person-centered planning; a chance to meet electoral candidates for office; and the establishment of new support groups. On the lighter end, our staff is already working on a “Cabin Fever” night for families. We were thinking that mid-winter might be a good time to test this fun activity! Finally, I have to share that I am sad, frustrated, and worried about our membership numbers. The Arc board and staff is intent on providing services and advocacy in order to better the lives of individuals affected by disability. This often requires educating and influencing policy makers. The Arc (locally and nationally) is not in a position to hire powerful lobbyists to tell our stories. It is up to us to speak up in a strong voice to make politicians understand our concerns and needs. So, PLEASE become a member. With just one new member and only 17 renewing members, July was one of our worst months for membership. We CAN do better. Please support our organization that in turn supports individuals and families with cognitive disabilities. Let’s all do our part to make it grow so by the year 2010 we have 2,010 members! Delaine Petersen Executive Director Sanfilippo Syndrome Sanfilippo Syndrome, or MPS (Mucopolysaccharidosis) III, is a rare genetic disorder that occurs in roughly 1 of every 70,000 births. Children with Sanfilippo are born missing an enzyme that helps break up used mucopolysaccharides (long chains of sugar molecules) called hepran sulfate. These chains instead remain stored in cells inside the body, causing continual and progressive damage over time. Symptoms usually become apparent between the ages of 2 and 6 years old and include regressing motor and communication skills, restlessness, joint pain, lack of balance, seizures, possible hearing loss and a shortened lifespan. There is no known cure.	Make a Wish... For Today “Lucas is quiet… he does a lot of talking with his eyes,” Stacey Montgomery, mother of Lucas (9), Mariah (15), Chelsey (11), and Hailee (10) said with a smile on her face and tears in her eyes. “Sometimes he talks too well with his eyes and gets away with things!” Lucas Montgomery was diagnosed with Sanfilippo Syndrome (MPS III) in January 2006 at age eight. The nature of the degenerative disease makes talking difficult, but as his mom described – Lucas finds ways to let people know what he’s thinking! Stacey and Lew Montgomery first noticed delays in Lucas’ development at age three. By age four his delay in language was obvious. The couple pressed their pediatrician and Lucas was referred to the Center for Disabilities and Development at the University of Iowa where he endured a series of tests every six months. The fact that all of the tests came back negative did little to reassure the Montgomery’s. Lucas began losing his fine motor skills - like easily holding a pencil or a fork. Climbing became difficult, he was no longer able to pedal his Big Wheel, and he was reluctant to walk for long periods of time. In November 2005, Lucas went six weeks without sleeping and Stacey and Lew’s alarm spiked. They went back to the University of Iowa where Lucas was referred to a geneticist who knew immediately that Lucas was dealing with MPS. Another series of tests confirmed the MPS III diagnosis. Adjusting to the diagnosis has been a struggle for the entire family. Thanks to the “Make a Wish Foundation,” 2006 will be a year of positive memories – memories of family, fun, and a trip of a lifetime – instead of “the year of the diagnosis.” Lucas’ geneticist nominated the Montgomery family for a “Make a Wish” trip and the Cedar Rapids Jaycees sponsored a trip to Orlando, Florida where Lucas and his family stayed at the Nickelodeon Hotel. The family visited all of the Disney theme parks, Island Adventures, and Orlando Studios. The highlight of the trip for Lucas was meeting Sponge Bob Square Pants and Dora the Explorer. For Stacey and Lew it was spending time with their family and not having to worry about anything; the program saw that everything, including accommodations for Lucas’ special diet was taken care of. The highlight for Mariah, Chelsey and Hailee was enjoying being kids instead of keeping an eye on Lucas. Commenting on the last six months of their lives Stacey reflected, “We believe there’s a reason for everything; this has definitely brought us closer together and taught us to live for today, not for tomorrow. We’ve learned not to put anything off. We live for the day we’re in.” On September 10, the Montgomerys will team up with the MPS Society to host a 5k run / walk called “Laps for Lucas” in order to raise funds for MPS research. The Montgomery family utilizes services from The Arc of East Central Iowa and Professional Home Health. www.arceci.org Are YOU a Member? If you're not a member and would like to join please contact Jessica at (319) 365-0487 x1020 or at jesch@arceci.org. Not sure about your membership status? Click here to find out!
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