Mentoring Program for Teens and Adults with SMA

Families of SMA, since its inception, has been committed to supporting individuals and families connected to Spinal Muscular Atrophy in a variety of ways, and has recently decided to expand its support services by utilizing the assistance of several adults successfully living with SMA, despite the limitations and obstacles that typically come along with the disease. The panel of adults, known as the Adults with SMA Committee, will, as its first task, dedicate their energies to the teenagers and adults who need guidance with “life issues” that tend to emerge in adulthood, providing individuals a place to turn throughout such transitional periods via an official Mentoring Program. Individuals approaching these developmental stages often fade into the background, however FSMA recognizes that it is crucially important for them to have someone to identify with, talk and vent to, relate experiences with, and share a common ground. Furthermore, the Mentoring Program with allow opportunities for others to network with peers in regards to accessibility issues, employment issues, personal assistance issues and/or concerns, relationship issues, etc.

Members of the Adults with SMA Committee (see bios and photos below)

Rocco Arizzi

Amy Marquez

Melissa Milinovich

Collin Pollack

Rachel Stewart

John (JJ) Wett

These individuals represent various age groups, genders, career specialties, SMA types, and lifestyle choices. They are a wonderful group of people who are approachable at any time of the day and more than eager to lend their assistance. For more information about the Program, to reach either member of the Committee, or to request being paired with a mentor, please send all correspondences to:

Mail: Families of SMA - Attn: Mentoring Program

P.O. Box 196

Libertyville, Illinois 60048

Email: mentoring@fsma.org 

Phone: (847) 224-9233

About the members of the Adults with SMA Committee:

Rocco Arizzi was born the youngest of four children in December 1973 in Stratford, New Jersey. Diagnosed with SMA Type 2 at 3, a year later Rocco was selected as the MDA Goodwill Ambassador on a state level and soon began a 2-year reign as the National Goodwill Ambassador. At the age of 5, he and his family moved to Texas. At age 16, Rocco was one of 200 Texas high school students chosen to attend the Texas Academy of Mathematics and Science, a 2-year early entry college program, at the University of North Texas. He went on to attain a Bachelor of Science in Electrical Engineering at the University of Texas in San Antonio. While working as an adjunct algebra instructor and tutor at a local community college, he earned his Master's degree in Electrical Engineering at the Florida Atlantic University in Boca Raton. Today, Rocco resides in Alexandria, Virginia and is employed as an electrical engineer at the Naval Surface Warfare Center near Bethesda, Maryland. He is also pursuing his PhD in Electrical Engineering from the Catholic University of America in Washington.

Amy Marquez was born in 1971 to a family of 15 children, 6 who were diagnosed with varying forms of SMA. Diagnosed herself with Type 1 at 3 months of age, she was trached at 5 and remained homebound until the 6th grade. Graduating both elementary and high school with high honors, she earned her Bachelor of Arts Degree Cum Laude in psychology and criminal justice in 1994 from Northeastern Illinois University. Her greatest successes in life include being wife to Steve since 1998 (who serves as the FSMA Equipment Manager) and the mother to 2 incredible daughters, Danielle and Harley! Amy has been serving as the FSMA Chapter Vice President in Illinois since 2001 and the Chairperson for the Adults with SMA Committee since 2006. Although unemployed due to medical complications, Amy is an advocate for disability rights (particularly in the areas of independent living and parenthood), provides mentoring assistance to others striving for empowerment and independence, and remains an active volunteer within the Service Dog Community. While she at times struggles with the challenges and setbacks SMA deals throughout the course of her life, she lives daily with the attitude that “You can go on living, or you can go on dying…the choice is yours!”

Melissa Milinovich is a 28-year-old woman with SMA Type I. She graduated from Wright State University with honors, has a Bachelor of Science in Business, has many IT certifications, and works as a Senior Analyst for the Hewlett Packard company. She will be returning to school part-time in the near future to obtain her Master Degree while maintaining her full-time job. On a personal level, she married James in 2003 and they had a beautiful baby girl in April of 2007. She has been an advocate for the disabled since a very young age, including being Colorado State MDA Poster Child for 2 years, and was Ms. Wheelchair Ohio 2005 where she spread the message of empowering yourself. Families of SMA has been an important aspect in her life for many years and she looks forward to mentoring young adults with SMA with hopes of easing their transition into adulthood.

Collin Pollack 

Rachel Stewart has SMA Type II and grew up in the San Francisco bay area. She had strong parent-advocates who taught her to continually advocate for her needs. Upon graduating high school in 1998, Rachel was accepted to attend UC Berkeley and subsequently transitioned from living at home with her parents to living independently in the residence halls and relying on attendants for her personal care needs. In 2005, Rachel moved across the country to complete an internship in Washington, DC; she subsequently moved back to California where the weather is milder! Rachel now lives in Sacramento working as a policy analyst for a grant-funded project related to employment for people with disabilities. She has a lot of experience in managing personal care attendants, navigating the world of services for people with disabilities, and understanding the variety of Social Security work incentives.

J.J. Wett lives in Sycamore, Illinois with his fiancé, Sheena. He currently works as a QMRP (which is basically a case manager) at a long term care facility for people with developmental disabilities. He just graduated with a Bachelor of Science Degree in Family and Child Studies from Northern Illinois University. He is currently 22 years old, and has SMA Type 1.