What if your child was the 780th person in the world to be diagnosed with a rare, life threatening disease?  Members of the Lubbock community know exactly how to answer this question; you make a lake. On February 11, 2017, community members will come together to fill this lake at the 5th Annual Night for Angels Benefit Dinner, benefiting local nonprofit, Alström Angels.

With only 1,000 patients documented in medical history, Alström Syndrome is one of the rarest diseases in the world. The 780th case is a 8-year-old little girl, right here in Lubbock.  Her name is Bryce.  In the state of Texas, there have been only four known children diagnosed with the rare disease.

Alström Syndrome affects children by causing complete blindness, deafness, type 2 diabetes, dilated cardiomyopathy, congestive heart failure, COPD, and kidney and liver failure.  It is one of the most brutal diseases there is, as it touches every organ in the body.  Most children are lost in their late teens and early twenties due to these medical complications.

“When we received the diagnosis of Alström Syndrome, our family had to make a decision,” said Cassie Johnston, co-founder of Alström Angels and Bryce’s mom.  “We could either be devastated and give in to the disease, or do something good with this terrible thing that has taken hold of our daughter.  We decided to make a lake.” 

This decision was the beginning of Alström Angels, a 501 (c)(3) nonprofit based in Lubbock that was started by Bryce’s family.  The charity’s mission is to bring more awareness to Alström Syndrome so children can be diagnosed earlier, raise funds to increase medical research and improve family support for those affected.

Due to the rarity of Alström Syndrome, research and family support programs receive less than $100,000 each year. The majority of these funds come from community support and private donations. Because funding is so lacking, Alström families adopted the slogan; Drop by drop we make a lake.  Every penny is a drop.  Eventually, we will be able to make lake. 

Since forming as a nonprofit in 2012, Alström Angels has funded more than $260,000 in medical research through local fundraising events. Co-founder of Alström Angels and Bryce’s dad, Lynn Johnston, credits this success directly to Lubbock and the surrounding communities. 

“The amount of support we have received from Lubbock and the surrounding communities has been unbelievable,” said Lynn.  “Our goal now is to continue to fill the lake, to the point it overflows.”

On February 11, Alström Angels will host the 5th Annual Night for Angels Benefit Dinner, with a goal to raise $95,000 to fill the Alström lake.  With the help of West Texas communities, the nonprofit has already raised $40,000 through business sponsorships of the event and retail product donations for the auctions. 
The Night for Angels Benefit Dinner will be held on February 11, 2017, at 4 Bar K in Lubbock.  The event will include a BBQ dinner, live music from The Rankin Twins, two raffle drawings, a silent and live auction, and is open to the general public.

About Alström Angels
Alström Angels is a 501 (c)(3) nonprofit charity dedicated to raising funds for Alström Syndrome research, increasing awareness of the rare disease among the general public and medical communities, and bettering family support for those affected.  
Contact: Cassie Johnston                                              
Cell: (806) 786-4903
Office: (806) 701-5290
Email: cassie@alstromangels.org
www.alstromangels.org

5th Annual Night for Angels Benefit Dinner:
February 11, 2017  Inside Four Bar K  302 East 82nd Street  7:00 p.m. – 11:00 p.m.  Lubbock, Texas

Tickets: www.alstromangels.org
$50/adults (ages 21 & up) includes: BBQ dinner, beer, wine and event shirt
$35/youth (ages 6-20) includes: BBQ dinner, 1 youth raffle ticket and event shirt
$5/little bits (ages 5 and under) includes: BBQ dinner, 1 youth raffle ticket and event shirt

(News release from Alström Angels)