THE DUCHENNE ALLIANCE

ARTICLES OF ASSOCIATION

Article I. AGREEMENT OF ASSOCIATION: THE DUCHENNE ALLIANCE 1.1 An association of Foundations as members is hereby formed under the terms of this Agreement and member Certificates of Participation. 1.2. The Association shall be known as The Duchenne Alliance (hereafter the Alliance) 1.3 The Alliance shall have __________________as its initial registered office and ___________________________, as its initial registered Agent. 1.4. The Alliance shall represent an association of Non Profit organizations for certain common purposes, but shall in all regards take no action that could lead to the termination of the Non Profit status of any individual members. Article 2. ALLIANCE FINDINGS AND MISSION 2.1 The Alliance arises from the common belief that its existence and undertakings are necessary to the welfare of individuals afflicted with Duchenne Muscular Dystrophy (DMD), and from the following propositions: 2.1.1 That new research has documented the onset of irreversible muscle cell damage before the onset of symptoms of Duchenne, 2.1.2 That current efforts to develop therapies for Duchenne Muscular Dystrophy are subject to factors which could unnecessarily delay the development of medicine for individuals affected by Duchenne, 2.1.2 That institutional fragmentation could unduly constrain the pace and effectiveness of research, 2.1.3. That the families affected by Duchenne cannot in good conscience delegate the responsibility to require the most positive outcomes possible for individuals affected by Duchenne in the shortest reasonably possible timeframes. 2.2 The Mission of the Alliance is: A call to action to save the health of all individuals suffering from Duchenne Muscular Dystrophy regardless of their age or circumstances. Article 3. OBJECTIVES

3.1 The Alliance objectives shall be: 3.1.1 To cause parties to pursue the solution based actions to achieve the best possible therapies (Outcomes) for families affected by Duchenne in the shortest practical time consistent with reasonable medical standards. . 3.1.2 To increase cooperation and shared actions among all parties whose expertise and/or efforts could reasonably affect faster Outcomes (hereafter Collaboration) 3.1.3. To support Collaboration by maintenance of a data banks and data sharing utilizing communication technologies, under the name the Duchenne Dashboard. 3.1.4. To identify means to expedite Collaboration, Data Sharing, and Outcomes 3.1.5. To identify artificial barriers to faster Outcomes, and to advocate and/or apply solutions to remove such barriers. 3.1.6. To maintain the Duchenne Dashboard to assist Collaborations. 3.1.7. To create, maintain, supply and make available information to members, parents, practitioners, researchers, clinicians, with support services. 3.1.8 To provide resources for members alone or in Collaborations with governments, local authorities, local education authorities, colleges, schools, educational institutions and bodies, local, national and international scientific organizations, institutions and bodies, training organizations and bodies, corporate bodies, firms and businesses with relevant data or services. 3.1.9 To share knowledge, build trust, leverage resources and streamline business practices

whenever and however possible to effect faster and better Outcomes. 3.1.10 To hold accountable the organizations whose missions and/or values were directed to Outcomes 3.1.11 To safeguard privacy of members or parties when required by law or the values of the Alliance Article 4. VALUES 4.1 The Alliance Members adopt these values as controlling all conduct in connection with the Association, its Members and their agents and principals. 4.1.1 All Foundations members shall have equal voting rights as Board members

4.1.2 All Foundations shall have their individual missions and initiatives respected and protected from interference from an Alliance member. 4.1.3 Nothing the Alliance does shall interfere with the 501 (c) (3) status of any member

4.1.4 All Foundation shall maintain the internal workings of the Board as highly valuable trade secrets, and none of them shall reveal them to the public. Article 5. MEMBERSHIP AND WITHDRAWAL 5.1 Membership is gained through executing a certificate of participation (appendix A). Members may withdraw from the Association at any time by executing a certificate of withdrawal (appendix B). Membership is limited to Duchenne focused Foundations 5.2 Nothing restricts the members of the Association from co-operating with or belonging to other solution focused organisations provided that any such activities do not violate the certificate of participation Article 6. GOVERNANCE AND MANAGEMENT 6.1 The alliance shall be governed exclusively by a Board (Board) comprised of all member Foundations 6.2 Each participating Foundation will designate a single person in their organization as a member of the Alliance Board. 6.3 The Board will decide by majority vote all matters concerning the Alliance. Every Board Member shall have an equal vote in all matters put to a vote under the Alliance. Any Board Member may bring a motion for consideration by the Board, provided it is duly made and seconded by a Member. 6.4 The Board shall authorize management staff including officers of the Alliance; however any such staff shall serve at the pleasure of the Board, report to it, and have no authority except that expressly approved in writing by formal Board Resolution. 6.5 The principal activities of the Alliance will be carried out by Committees and Subcommittees. Any member shall have the right to be on any committee or sub committee. 6.6 All Committees and Subcommittees shall be adopted by Board Resolution. Members shall subscribe to and participate in Committees on a voluntary basis. 6.7 All Committees shall have a charge from the Board and shall perform that charge as a first priority. Nothing prevents a Committee from making recommendations to the Board, but if a committee shall do so, it shall provide, at a minimum, a budget and critical path plan for any action it requests from the Board.

6.8 All details of committee functions shall be the authority of the Board. All Committees shall have a secretary who shall keep a record of the Committee action and post it for review by any member at any time. 6.9 The original adoption of these Articles shall be confirmed by the execution of not less than ten Participation Agreements on or before August 15, 2011, and the notation below of all Members existing at that date.

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