Last year, we launched a new program that allows individuals living with Duchenne (and their siblings) to request a free birthday cake from Best Day Ever Foundation, Inc. if they live in Indiana! Today we are excited to wish one of our recipients a very happy 17th birthday! #BestDayEver #Duchenne #Indiana #HappyBirthday
关于我们
Best Day Ever Foundation’s mission is to support families living with Duchenne Muscular Dystrophy and other life-threatening or complex medical conditions by helping them live the best lives possible - one BEST DAY EVER at a time! We do this by: Blessing families. Educating families. Sharing resources. Taking time to build relationships with the families we serve. Best Day Ever Foundation is a registered non-profit 501(c)(3) and all donations are tax-deductible. EIN #81-1358629
- 网站
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https://www.bestdayeverfoundation.org
Best Day Ever Foundation, Inc.的外部链接
- 所属行业
- 非盈利组织
- 规模
- 2-10 人
- 总部
- Indianapolis，IN
- 类型
- 非营利机构
- 创立
- 2017
- 领域
- duchenne、muscular dystrophy、Indiana、local resoures、education、Medicaid Waivers和Indiana Medicaid
地点
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主要
获取路线
US，IN，Indianapolis，46227
Best Day Ever Foundation, Inc.员工
动态
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Thank you Catalyst Pharmaceuticals, Inc.! We are BEST together!
This Holiday season, Catalyst's Advocacy Team had the pleasure of attending the Best Friendsgiving Day event organized by Best Day Ever Foundation, Inc. It was a wonderful event filled with friend making, story sharing and learning. We were thankful to be there and meet so many wonderful families in the Duchenne Muscular Dystrophy (DMD) community. To learn more, visit https://lnkd.in/gWmbjPyH.
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Thank you, ITF Therapeutics LLC! We appreciate your support! Thank you for sponsoring this event! WE ARE BEST TOGETHER!
Julz from our patient advocacy team had a fantastic time joining the Duchenne muscular dystrophy (DMD) community for the Best Day Ever Foundation, Inc. Friendsgiving celebration in Indianapolis, IN. We are so fortunate to have groups that organize gatherings where individuals living with DMD and their families can come together, share experiences, and have fun. Thank you to the Best Day Ever Foundation for making this memorable event possible! ? #Duchenne #DMD #RareDiseases
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Indiana Families - Please join us for our last caregiver luncheon of 2024! RSVP here: https://lnkd.in/dMxShqJh #Indiana #duchenne #caregivers
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2024 Best Friendsgiving Ever - It was an evening filled with connecting, playing, creating, sharing, learning and reflecting on all we have to be thankful for this year! Thank you Kahlie Day for capturing some of our special moments! ?? We are BEST together! https://lnkd.in/g58CvhYD
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We are looking forward to hosting our annual "Best Friendsgiving Ever" event in downtown Indy tomorrow! , Catalyst Pharmaceuticals, Inc. Chef Chip Huckaby Elite Home Healthcare LLC ITF Therapeutics LLC NS Pharma, Inc. The Produce Moms PTC Therapeutics, Inc. Samuelson Insurance Group Sarah Lux Sarepta Therapeutics - Thank you for your support! We are BEST together!
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We are looking forward to sharing our "Best Friendsgiving Ever" with families living with Duchenne muscular dystrophy on Saturday, November 23rd, in downtown Indy! So far, we have 19 different families registered and almost 150 total RSVPS but we would love to welcome even more families! It is not too late to register! This event is part of our ongoing, monthly, educational and social program series - Living Our BEST Lives with Duchenne. This program helps connect families with each other and with resources to help them live their best lives possible while navigating a life with Duchenne. When an individual is diagnosed with Duchenne, it is really the entire family living with Duchenne in some way. This is why, at the Best Day Ever Foundation, we know how important it is to support the entire family throughout this journey. We are excited to welcome parents, siblings, aunts, uncles and grandparents to this event as we take time to reflect together on everything we have to be grateful for this year! This year we have a few Duchenne pharmaceutical companies joining us, and a few other local businesses and non-profits. There will be a resource fair, families will get to hear some brief remarks from all of the companies attending who have an FDA approved therapy for individuals with DMD, and they will get to hear from and about a few other non-profits who provide resources to help our families live their best lives. We also have some special guests joining us who are working right here in Indiana on new therapies that could be promising for individuals living with DMD. This event is not just about education and learning about resources though! Families will enjoy a delicious meal together prepared by Chef Chip Huckaby, play fun games, and decorate (and eat!) cupcakes while learning more about our new birthday cake program for 2025 for individuals living with DMD and their siblings. They will also receive a mini digital art lesson and get to create a digital art Thanksgiving project while learning more about our free digital art classes for individuals living with DMD and their siblings! Do you know a family living in Indiana who may want to come to this event? Please share and have them register by this Friday! Interested in sponsoring this event? It is not too late for that either! Best Day Ever Foundation is a registered 501(c)(3) nonprofit, powered by volunteerism and a lot of love. We are grateful for any donations, sponsorships, grants and other forms of support we receive as this program continues to grow and we work together to change lives - one BEST DAY EVER at a time! WE ARE BEST TOGETHER! Register: https://lnkd.in/dMxShqJh ITF Therapeutics LLC NS Pharma, Inc. PTC Therapeutics, Inc. Sarepta Therapeutics Team Joseph Muscular Dystrophy Family Foundation (MDFF) A Kid Again Indiana Wish Sarah Lux Elite Home Health Care Laura McLinn, M.S. Ed. Shaun Johnson Mia Samuelson Samuelson Insurance Group Renzhi Han
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Recently, I learned about another organization that can help provide some assistance to families living with Duchenne (child must be under 21 years old) and other neuromuscular or degenerative diseases. Their mission is to provide financial assistance for families who are unable to afford adaptive equipment, travel, therapy and other items that are not [fully] covered by insurance or other organizations. They also have a program that can help with accessible vans (must live in Michigan for the vehicle assistance program). The organization is called, "Lori's Voice." You can find more information and a link to their website at www.DMDResources.org - a website I created just as a "gathering place" for all the great resources I find! If you are anything like me, sometimes you hear about an organization, an event, a camp or retreat, a DMD treatment or clinical trial, etc. and then later you forget the name of it, the contact information, etc. This website was designed to help us all have one easy place to collect all of that information and make it easier to find! If you know about a resource that can help families living with DMD, and you do not see it on this website, please complete the form on the website to have it added. WE ARE BEST TOGETHER! #duchenne #resources #dmd
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I LOVE my home state of #Indiana so much! One of the things we help families with as part of our "Living Our BEST Lives with Duchenne" monthly program series is making sure they know about all the great resources we have right here in Indiana to help them live their BEST lives possible! We help families apply for Indiana Medicaid waivers and once they have them, we help them navigate the benefits. Not all of the benefits are related to health care though. Di you know that when families have a Medicaid waiver in Indiana, they can also sign up for something called the Access Pass? The Access Pass allows families to enjoy experiences throughout Indiana for just $2 per person. Newfields a Place for Nature & The Arts is one of those places! We are all hopeful for more treatments and eventually a cure for Duchenne. In the meantime though, living our BEST lives possible reminds us how important the actual journey is too. Best Day Ever Foundation, Inc. #BestDayEver www.discovernewfields.org
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Update from FSSA for Indiana Families: Building Bridges events are opportunities for individuals with disabilities and their families to meet and speak with the Bureau of Disabilities Services staff. These events will allow for individuals and families to ask questions and share their feedback as well as discuss any other concerns or successes with bureau services. These meetings are solely for families and individuals with disabilities to provide a forum for constructive and valuable conversations on successes and concerns, as well as providing suggestions or input for positive change. It is the desire of BDS that these meetings will allow for meaningful conversations that result in positive outcomes and stronger relationships. Following are the dates, times and locations for the next in person meetings. 10/21/24: Pike County Public Library Meeting Room 1 1008 E Maple St. Petersburg, IN 47567 3 -5 p.m. EDT 11/4/24: Irvington Preparatory Academy 5751 E University Ave. Indianapolis, IN 46219 Conference Room 5 - 7 p.m. EST #Indiana