● Resource Type and Name - This is a Federal Resources; Muscular Dystrophy Association

● Contact Information –

■ 212.682.5272 or 800.572.1717

● Local Office

○ 11 East 44th Street, 17th Floor New York, NY 10017

● National Office:

○ 161 N. Clark, Suite 3550 Chicago, Illinois 60601

● Website: https://www.mda.org/disease/duchenne-muscular-dystrophy

● Email: resourcecenter@mdausa.org

● Program Information: The Muscular Dystrophy Association provides the public free

information about new research concerning muscular dystrophy, technologies that can assist

individuals who have been diagnosed, and shares treatments that can help; through blogs,

websites, email subscriptions, and local agencies/groups. The main topic this resource is

about the symptoms that can be seen in an individual with Muscular Dystrophy. The

Muscular Dystrophy Association receives their funding through donations from various

parties. There is no fee for this resource.

● Policy Information: Open regular business hours, 10 a.m. to 9 p.m.. No fees, applications

are required to receive more information.

● Applications/Forms: Yes, there is an online application. The application needs:

○ Name
 ○ Email address

● Pamphlets/Handouts: Printed are appropriate application requirements and contact

information.

Rationale: Because the Walsh’s are firm believers in self-discovery and research, this resource

will provide them easy access to current scientific research concerning physical degradation that

their son will experience. This information will be updated monthly through emails, posts, and

face to face interactions if desired.

Concern 2: The mother is worried about diseases like pneumonia, that will further harm

her son, Declan’s breathing. She wants to know more about respiratory illnesses that

diseases like pneumonia will not come back.

Current Resource/Information: Mrs. Walsh knows illnesses can have a deadly impact her son.

She knows this because he has experienced pneumonia, resulting in him breathing off oxygen.

Outcome: Mrs. Walsh will have background information on diseases and pulmonology that her

son will be more susceptible too, besides pneumonia.

Suggested Action: Because Saoirse has technology available to her, she will read a peer reviewed

journal that address pulmonology and other fatal lung diseases that can harm her son.
● Resource Type and Name – State Resource, Respiratory Management of the Patient With

Duchenne Muscular Dystrophy

● Contact Information –601 13th Street, NW , Suite 400 North Washington, DC 20005

USA 202/347-8600

● http://pediatrics.aappublications.org/content/pediatrics/142/Supplement_2/S62.fu

ll.pdf or http://pediatrics.aappublications.org/content/142/Supplement_2/S62

● mailto:kids1st@aap.org